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Palliative Care: Hospice

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    Posted: Sep 29 2011 at 11:22am

What is Hospice?

Hospice care is a type of palliative care that is focused on the end of life. It is for patients whose cancer cannot be treated. For a patient to be eligible for hospice services, the doctor must certify that the patient is expected to live six months or less.

 

The goals of palliative care and hospice care are the same: to relieve pain and suffering and to improve the quality of life.

 

Credit: US News and World Report article developed in partnership with The University of Texas MD Anderson Cancer Center.

Link to full article: http://health.usnews.com/health-conditions/cancer/information-on-palliative-care



Edited by ArleneB - Sep 29 2011 at 12:15pm
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Dear TNBC Foundation family,

Hospice-end-of-life care


In the last year we have, tragically, lost many women with TNBC.

I am not a medical professional and I am not attempting to tell any woman to stop chemo and start a hospice program.

The  purpose of this forum is to let women and their families understand how hospice works so that if it is something to be considered the marvelous women here are more knowledgeable about what to expect. This will be a multi-post project.

Typically, from what I have seen many women fight their disease with chemo treatments literally until almost the last day.  That is what the woman, and often her family, seems to want and I believe most oncologists encourage that plan.

At times, though, a woman and her family decide that because chemo has not been effective a decision to stop treatment is made.  And, at times, a oncologist will tell the patient “we have tried everything and the treatments have failed you. I think it is time for you to concentrate on your Quality of Life (QOL) and I would recommend you enter a home hospice program." 

It is also extremely important to be aware that if  a new promising clinical trial comes along you can stop hospice care with a simple phone call and if. e.g., you qualify for the new trial or want to take a newly approved drug,  you can enter the trial as long as you meet the criteria or take the drug, on the advice of your oncologist.


I will present, and hopefully others will as well, in much greater detail, what a home hospice program entails, but for now I think everyone is aware that a home hospice program is normally utilized when the patient does not want to do medical treatment for their cancer.  

This is intended to be a forum where women and their families can learn about hospice and most importantly can feel ‘safe’ writing about their experiences. A woman some months ago, wrote on the board that she was stopping chemo and basically said goodbye to us. I was able to get in touch with her and I told her that I understood and respected her opinion and wanted to send her a book with a "tough title" but that I thought the book might help her. I asked her if I could tell her the title and she said “I have been preparing for this the last 18 months. If you have anything that can help me please send it to me. What is the name of the book?” I told her it was Dying Well by Dr. Ira Byock. She thought that would be “wonderfully helpful” and I sent her the book. Dr.Byock’s dad showed his son, by example, what ‘dying well’ meant to him and others share their journeys as well..

Of course everyone’s experience is different and I am not suggesting that this book will be useful for everyone.

I have also sent several women copies of Graceful Passages which is a book with various inspirational passages representing various religious beliefs as well as secular thoughts that are also on CD. And there is a CD which just has music on it.
Again, I don’t believe every ‘passage’ will resonate with all here but some may and it has been my experience that when than happens it helps the patient.

I am hoping those here who are thinking about hospice care will post their thoughts and questions and for those of you who are in home hospice programs now, perhaps you can share some of your experiences. And for family members who have lost loved ones who were in hospice, perhaps you can share your experiences as well?

Also, some cancer centers have what is called an “acute care facility” within the hospital and that is different from hospice in many respects but also similar in other respects. More on that at a later date.

Importantly, hospice care is normally paid for by Medicare.

As always, I believe the conversations will be respectful and hopefully enlightening.

with my prayers that this new forum will be helpful to some here and sorry we need this forum but, unfortunately, we do,

Steve



Edited by steve - Sep 29 2011 at 12:41pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 7:13pm
Steve I know you have worked tirelessly to get this important topic added to our discussion panel and I have to say I am so relieved that you have been successful. As usual, this Forum and her Family of Warriors will now be able to educate, support and generally create a safe haven for the women whose needs can be met by pallative care. It is just so important and I am so proud of you for finding a way to get this up and going.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2011 at 7:35pm
Thanks for your kind words, Mainy, but the credit goes to the founders of The TNBC Foundation for recognizing the importance of this forum and for the board of directors for approving it. And also to Michelle and Arlene who worked hard on this project

As you know this subject is very close to my heart and the recent losses our family has suffered make this topic even more pertinent, unfortunately.

Over time, I am hopeful this forum will become a useful resource.

love,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote reynabb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 8:20pm
Well done Steve,
it is very important to Talk about dead, so we can understand better and that way it will hurt less when a loved one dies. (have the time to learn the feelings and thoughts of the one is dying, this will help also the person dying to leave more peaceful knowing that the people we love will have peace and accept our dead. ) we need to discuss this things , understand and accept .
I just start in Hospice this thursday  10/11
Cancer did not win my battle, because I will died but cancer never took my happiness,to be thankful with life and to accept my dead.


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Dear reynabb,

Thank you so very much for posting on this topic that can be so difficult to talk about. It sounds like you are accepting the end of this journey in a way that few people can. I admire you for that. 

From my experience, the hospice professionals are very caring, wonderful people and I hope they help you be as comfortable as possible.

If you are able to concentrate these days or have some in your family who might appreciate reading about this topic, I would like to send you a book. It has a difficult title, but it is a lovely book. It’s called Dying Well by Dr. Ira Byock. The other book/cds that may help you is Graceful Passages. I hope it would benefit you or someone/s in your family. 

Please send me a PM with your address and I will send it out to you. I have no financial interest in the books and promise not to write to you or give your name to anyone. I can send it to a relative or straight to you at Hospice, if you would like...I am sending you a PM so that you can reply easily.

May you be as peaceful as possible and may you be surrounded by love. I know all here are sending you their love.

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 11:57pm
If anyone is interested, Nova Scotia has introduced a Personal Directive so our health care system, family and others know what we want and don't want with regard to treatments.  Everyone needs a personal directive because any of us could be taken in a minute and not because we have cancer.  Hopefully this will not offend anyone because it is a very important tool to ensure our wishes are carried out.  It tries to let everyone know what the other needs and wants.  I am posting this in full because it is a PDF file and cannot just copy the link.  Take care and should anyone have questions they may contact me as well either through PM or email. 
 

Introduction

Planning for the future is important. You should think about who you would want to make decisions for you if you are not capable (temporarily or permanently) to make them yourself. You should think about what kinds of decisions should be made for you and how they should be made.

To get ready for the future, think about preparing:

(1) An Enduring Power of Attorney that allows you to appoint someone to look after your money, property and financial affairs when you are not mentally capable of making financial and property decisions, or if you wish them to assist you with your financial affairs when you are still capable. It is only in effect when you are alive.

(2) A Personal Directive that allows you to set out how personal care decisions, including health care decisions, are to be made for you when you are not mentally capable of making those decisions. It is only in effect when you are alive and mentally incapable of speaking for yourself.

(3) A Will that allows you to set out how you want your personal, property and financial assets handled after you die. A Will takes effect when you die.

This document provides information about Personal Directives only. For information about Enduring Powers of Attorney and Wills, speak with a lawyer, tax adviser or financial planner.

Getting Started

It is important for everyone to have a Personal Directive. We can lose our mental capability temporarily or permanently. We can lose our mental capability slowly, such as with Alzheimer’s Disease, or very suddenly, as a result of a car accident. Preparing a Personal Directive gives you a voice in the care you will receive if you cannot make your own decisions at the time. It also helps those who will have to make personal care decisions for you. It may be the best gift you can give to your loved ones who may have to make difficult decisions for you in the future.

It is important to talk about these issues with the people you trust—your family, friends, health care providers and spiritual advisor's. Filling out a Personal Directive can be a way of sorting out your values, fears, hopes and wishes about how you want to live. It may take some time and help from others but it can be a very positive journey. In picking up this form, you have made the first step.

The Government has prepared related materials that you may wish to read before you prepare a Personal Directive. These materials are available at www.gov.ns.ca/just/pda .

1

Personal Directives in Nova Scotia

Making a Personal Directive Information and Sample Form

These materials include:

• Planning for Your Future Personal Care Choices – this is a brochure that provides general information about Personal Directives

• Personal Directives in Nova Scotia – this is a booklet that provides general, but detailed, information about Personal Directives

• Making a Personal Directive: Information and Sample Form [this is the document you are reading now] – the document walks you through how to fill out the sample Personal Directive form and highlights choices for you to consider

• Naming a Delegate Only in a Personal Directive: Information and Sample Short Form – the document walks you through how to fill out a Personal Directive when the only thing you want to do is name one person to make decisions for you A Personal Directive is a legal document under the Personal Directives Act that allows you to:

• name a person [called a “delegate”] you trust to make personal care decisions for you when you are not capable of making these decisions;

• write down instructions or other information about what or how personal care decisions should be made for you when you are not capable of making these decisions; or

• do both of the above (name a delegate and set out instructions/information).

Personal care decisions are decisions that relate to such things as health care, nutrition, hydration, shelter, residence, clothing, hygiene, comfort, recreation, social activities and support services. They do NOT include financial decisions. To appoint a person to make financial decisions you will need to prepare an Enduring Power of Attorney.

Your Personal Directive needs to be written, dated, signed by you and witnessed by an adult.

If you are not physically able to complete the form, you may direct another person to fill it out for you. You do not have to use the attached form (or the Naming a Delegate Only form), but you may wish to look at it and the materials referenced above because they highlight issues you should think about when writing a Personal Directive.

Your Personal Directive is only in effect when you are not capable of making decisions for yourself. You may be incapable temporarily or permanently.

You do not need a lawyer to write a Personal Directive, but you may wish to speak with a lawyer about it when you are discussing other planning tools (such as an Enduring Power of Attorney and a Will).

Each section in the attached Personal Directive form is optional. It is your choice whether to fill in a given section. You may choose to fill in only one section, or you may choose to fill in many sections. Please initial beside each item to confirm this is your choice. Your witness should also initial beside the item.

2

Instructions for Completing a Personal Directive Sample Form

Name

I, __________________________________________________, make this Personal Directive.

Name of Maker

Print your name here. You are the maker of this Personal Directive and will be referred to as the maker for the rest of the form.

To make a valid Personal Directive you must be capable of understanding the nature and effect of your Personal Directive. That means that you understand what you have put in your Personal Directive and the consequences of your choices. There is no age requirement for writing a Personal Directive.

1. Consultation when assessing capacity(optional)

Your Personal Directive only takes effect when you are not capable of making your own care decision (when you are not able to understand the nature of the decision to be made and the consequences of your choice). Your health care provider will determine whether you demonstrate an understanding of the proposed care, the risks and benefits, the alternatives, etc. This happens every time services are provided to a patient/client and is part of obtaining informed consent.

Determining capacity can be complex and sometimes it may be helpful for the health care provider to speak with someone who knows you well. You may identify someone by name (for example, Jane Smith), title or position (for example, my parish priest/minister) with whom you would like your health care provider to speak.

2. Revoking (Cancelling) Other Personal Directives (optional)

If you have never written a Personal Directive before, go to section 3.

Section 2 allows you to revoke (cancel) previous Personal Directives.

The Personal Directives Act allows you to have more than one Personal Directive so long as they deal with different types of decisions. For this reason, there are two options for revoking or cancelling previous Personal Directives. This section allows you to:

(1) revoke all previous Personal Directives or

(2) revoke only certain previous Personal Directives, allowing the other(s) to remain in effect. Enter the date and a brief description of the previous Personal Directive(s) that is being revoked.

Initial the appropriate option to indicate you agree with this revocation. Initial beside only one of the options.

It is a good idea to review your Personal Directive every year, whenever you or your delegate have a significant change in your health, or when you experience a significant event in your life such as the death of a loved one, a marriage or a divorce.

3

3. Authorization to Act as Delegate (optional)

A delegate is someone you name to make personal care decisions (including health care decisions) for you when you are not capable to make these decisions. The delegate must be at least 19 years old (unless they are your spouse). They do not have to live in Nova Scotia as long as they can be contacted.

There are two options under section 3. Choose only one of the options if you decide to complete this section.

(1) You may name one person to act as your delegate and make any personal care decision that you are not capable to make.

You may choose to name an alternate delegate to make decisions when the delegate named before is unable or unwilling to make a decision. If you choose not to name an alternate delegate, it is advisable to place a line through the space provided for naming an alternate delegate.

(2) You may choose different people to act as your delegates for different decisions.

Each person named will be able to make decisions only for the type of decisions identified in your Personal Directive.

You may choose to name an alternate delegate to make decisions when each delegate named before is unable or unwilling to make a decision. If you choose not to name an alternate delegate, it is advisable that you place a line through the space provided for naming an alternate delegate.

Your delegate should be someone who:

• knows you very well

• is trustworthy

• is willing to respect your views and values

• is able to make difficult decisions in stressful circumstances and who you trust to speak for you

Sometimes a spouse or family member is the best choice. Sometimes they may not be the best choice because they may be too emotionally involved. Only you know what is best for your particular circumstances. Talk over your wishes with your delegate(s) and make sure they will respect your wishes, even if your wishes conflict with your delegate’s wishes.

If your delegate does not know your wishes, they will make decisions based on your values and beliefs. If they don’t know your values and beliefs, they will make decisions that are in your best interests. When deciding what is in your best interests, the delegate needs to consider whether consenting or refusing consent will improve or deteriorate your condition; whether it is the least restrictive option; and what are the risks and benefits of consenting or refusing to consent.

If you decide not to name a delegate and you do not provide specific instructions under section 5 of the sample form about the decision to be made, a person authorized under the Personal Directives Act may be asked to make the decision on your behalf. These people are called statutory decision-makers and they may only make decisions about your health care, placement in a continuing care home, and home care services. The people in the list below are potential “statutory decision-makers”. A care provider will start at the top and work their way down the list until they find an adult who has been in contact with you over the previous year and is willing to make the decision.

spouse (includes married, common law, registered domestic partners); child

 parent

• person who stands in the place of a parent • sibling • grandparent • grandchild • aunt or uncle • niece or nephew • other relative

If there is no one from that list available or willing to make the decision, the Public Trustee’s office will be contacted. A stranger may not be the person you wish to make your decisions.

Your statutory decision-maker will make decisions based on your values and beliefs. If they don’t know your values and beliefs, they will make decisions that are in your best interests.

When deciding what is in your best interests, the statutory decision-maker needs to consider whether consenting or refusing consent will improve or deteriorate your condition; whether it is the least restrictive option; and what are the risks and benefits of consenting or refusing to consent.

If you choose to name a delegate, go to section 5.

If you choose not to name a delegate, go to section 4.

4. No Delegate Authorized (optional)

You may decide that you do not want to name a delegate but you do want your care providers to follow specific instructions. By completing section 4, you are telling care providers that your instructions should speak for themselves and the care providers can rely on them without needing to get the consent of another person. You will write down your instructions in the next section of the sample form (section 5). Talk about your instructions with your care providers, including health care providers, to ensure your instructions reflect your wishes and to ensure they understand what you want.

It is important to know that it is very difficult to write down instructions that cover every situation. If your instructions are not relevant to the decision to be made or if they are not clear, the care provider may need to talk with a statutory decision-maker and ask them to make the decision on your behalf. In these circumstances, the statutory decision-maker would be guided by what you wrote down and make the decision they think you would have wanted.

55. Specific Instructions (optional)

You may write down specific instructions that you want your delegate to follow, or if you have not named a delegate, that you want your care providers to follow. For example, you may decide to write down instructions about a medical treatment you would or would not want in certain circumstances. For instructions relating to health care, you should talk with your health care provider so they can provide you with accurate information about health conditions and treatment options. It is important to be informed before you decide what instructions to write down. At the end of these Instructions for Completing a Personal Directive (Long Form), there is a list of words that relate to personal care choices (including health care).

These may help you think about some of the possible choices you may want to consider.

When you write down your instructions, it is very important that you express them clearly and identify the situations where you expect the instructions to be followed. Your delegate or care providers can only follow instructions that are clear (everyone would agree on what you mean) and that apply to your circumstances at the time the decision is made. Some examples of what you might want to express in this section include:

• My faith affiliation is such that I would not want a blood transfusion under any circumstances • If I have a severe stroke [see information that follows these Instructions] and cannot maintain an acceptable quality of life [you need to say what ‘acceptable quality of life’ means to you here or in section 6] I do not want anyone to attempt to or continue to resuscitate me if I have no pulse and am not breathing • If I can give a family member an organ and still maintain an acceptable quality of life [you need to say what ‘acceptable quality of life’ means to you here or in section 6] then I want to donate the organ while I am still alive Remember that you can fill out both section 5 (specific instructions) and section 6 (other information). If your instructions are unclear or do not apply to the situation, your delegate or statutory decision-maker will make decisions based on your values and beliefs. If they don’t know your values and beliefs, they will make decisions they believe are in your best interests.

6. Other Information (optional)

You may write down general information that you think will help your delegate or statutory decision-maker when it comes time to make personal care decisions (including health care) on your behalf. You can write down specific instructions (under section 5) and general information under this section of the Personal Directive.

It is impossible to anticipate every situation. It may be most useful if you express your basic personal values and beliefs about your life and future care and leave the specific decisions up to your delegate or statutory decision-maker. You should think about your religious beliefs, cultural preferences or other information that will help guide your delegate or statutory decision maker when they make decisions for you in the future. What you write down should reflect YOUR personal values, beliefs and wishes, and should identify what is important to YOU. Talk to your delegate and loved ones about this. Some examples of what you might want to express in your Personal Directive include:

6• what you would consider to be an acceptable quality of life (think about such things as:

*recognize family and friends *communicate *feed myself *take care of myself

*be conscious and aware of my surroundings and people *live in my own home

*breathe on my own without assistance from a ventilator)

• your views about admission to a continuing care home if necessary

• whether you prefer to stay at home as long as this does not cause undue stress on your family and caregivers

• your values and beliefs about sexual activity

• your values and beliefs about what you eat

• your preferences around social activities

• whether you want everything possible done to maintain life

• whether your religious beliefs are important to you and because of this you have certain wishes

• if you are nearing death, what you would want or not want to happen

• whether you would want to die at home if possible

Your wishes will be respected as long as they apply to the situation and they are possible to comply with. For example, it may not be possible to comply with your wish to never live in a continuing care home if your physical care needs become too much for your family and home care services. Current administrative processes will be followed consistently whether you are making the decision yourself or if the preference is expressed in a Personal Directive.

Health care decisions are complex and it is helpful to think of them in two general contexts:

(1) situations where you have a condition that you will recover from and

(2) situations where you have a condition that is life threatening or irreversible and unacceptable to you.

You may want to list your health care wishes under these two general contexts. For example, you may want to say something like:

“If I have a condition that is reversible or where I can achieve an acceptable quality of life [and you have described what ‘acceptable quality of life’ means to you], I want the following:

e.g., all necessary health care including life saving treatment; or all necessary health care except…”

“If I have a condition that will cause me to die soon or a condition (including substantial brain damage or brain disease) where there is little reasonable hope that I will regain a quality of life acceptable to me [and you have described what ‘acceptable quality of life’ means to you], I want the following: e.g., resuscitation; comfort measures only; specific treatments if recommended by my health care providers e.g., antibiotics, kidney dialysis; transfer to a hospital if necessary; all necessary health care to prolong my life…”

At the end of these Instructions there are descriptions of some of the more common health conditions and treatments that many people think about when planning for their future health care decisions and making their Personal Directive. Talk to your health care provider about your current health condition and future treatment options.

7. Instructions about Statutory Decision-makers (optional)

You may decide that you do not want to name a delegate and that you are comfortable with having your nearest relative act as your statutory decision-maker, but there is a relative(s) in the following list that you would NOT want to make decisions for you. If so, you can put that information in your Personal Directive.

• spouse (includes married, common law, registered domestic partners) • child • parent • person who stands in the place of a parent • sibling • grandparent • grandchild • aunt or uncle • niece or nephew • other relative

8. Consultation when Delegate Making Decision (optional)

If you fill out this section, you must name a delegate.

Sometimes there may be more than one person that you want to be involved in making a decision about your personal care (including health care). Where you name a delegate, only your delegate can make the decision on your behalf, but you can direct your delegate to talk with certain people (e.g., family, friends, spiritual adviser) before making a final decision.

This can be helpful to inform your delegate and help them make the decision on your behalf.

9. Notification (optional)

You can decide if you want certain people told, or not told, when your Personal Directive becomes effective (when a care provider has determined that you are not capable of making a personal care decision (including health care)). When this happens your care provider will look to your Personal Directive to see who should make the decision for you or to see if you have provided instructions about the decision.

You should list the people you want to be told when you have been determined to be incapable of making a personal care decision. You may want to list people who are close to you and who will support you. This may include your family, spiritual adviser, Power of Attorney that you have appointed, lawyer and others. It is helpful to list their contact information.

There may be people who you do not want to be involved in your life when you become incapable of making personal care decisions. You should list their names.

10. Compensation for Personal Care Services (optional)

If you want to name as your delegate the person who provides you with personal care services for pay, then you must specifically authorize the details of your payment agreement in your Personal Directive. It is advisable that you speak with a lawyer if you want to complete this section.

11. Remuneration for Delegate (optional)

Generally, delegates can only be reimbursed for reasonable out-of-pocket costs associated with being a delegate, but they cannot be paid for taking on the role of a delegate. However, if you want to pay your delegate for acting as your delegate, then you must specifically set out the details of this payment in your Personal Directive. It is advisable that you speak with a lawyer if you want to complete this section.

12. Signatures (mandatory)

If your Personal Directive is not signed and witnessed properly, it will not be valid. You must sign and date the Personal Directive in the presence of a witness. If you are physically unable to sign the Personal Directive but you are mentally capable, you can direct another person to sign for you in front of you and the witness. The person who signs for you can’t be your delegate or their spouse.

Who witnesses your signature is important. The following persons may NOT witness the signing of a Personal Directive:

• A person you named as your delegate. • The spouse of your delegate. A spouse includes married, common law (partners living together for 1 year or more) and registered domestic partners. • A person who signs the Personal Directive on your behalf. • The spouse of a person who signs the Personal Directive on behalf of the maker. A spouse includes married, common law (partners living together for 1 year or more) and registered domestic partners.

Suggestions for after you complete your Personal Directive

• Keep the original at home in a special place and tell trusted family and friends where it is. • Give a copy to: – your delegate; – trusted family members and friends; – your physician and other people who will be providing care to you. • Take a copy with you: – If you are travelling. Many provinces and U.S. states will honour your wishes. Some will follow the rules in place in their province or U.S. state.

If you plan to travel you should check the procedure in that location. – If you are admitted to a hospital or continuing care home. • List the people you have given copies of your Personal Directive to and keep this list with your Personal Directive. If you change or cancel your Personal Directive, let these people know.

Copies of my Personal Directive have been given to: Name Relationship Contact Info

Note: This information is provided to help you understand the Personal Directives Act.

It is not legal advice or medical advice. Consult a professional if you need help to understand your options and the implications of your choices.

Information to think about when planning for future personal care decisions

Some general information and descriptions of common health conditions and health interventions that you may want to think about when planning for future care decisions are provided below. You may want to discuss some of the health interventions with your doctor before completing your Personal Directive.

Personal Care Terms

Clothing relates to decisions about what you want to wear. For example, you may want to wear clothing that has religious or cultural significance, or you may want to look a certain way.

Comfort measures focus on care not cure. Some examples of comfort measures are: nursing care, medication for managing symptoms including pain, oxygen for shortness of breath, fluids for dehydration except by intravenous therapy, mouth care, positioning, warmth, emotional and spiritual support, and other measures to relieve pain and suffering. Comfort measures do not include treatment aimed at cure of the illness.

Continuing care homes are homes under the authority of the Departments of Health or Community Services (for example, nursing homes and group homes).

Nutrition relates to the food or drink you may wish to have. You may want to receive a certain type of diet (for example, vegetarian); you may want to receive food consistent with your cultural or religious beliefs (for example, Kosher or Halal). Nutrition can become a health care issue (for example, if you become diabetic).

Shelter is about where you live. You may wish to indicate your preferences about where you would like to live, especially if you cannot be cared for at home. Do you prefer a specific continuing care home? Do you prefer a geographical location?

Support services means services that help a person with daily activities such as housekeeping, preparing meals, laundry, toileting, dressing, feeding, mobility and transportation (for example, for grocery shopping and going to appointments).

Health Conditions

Stroke is a potentially life threatening event in which parts of the brain are deprived of blood carrying oxygen. Strokes are commonly caused by either blockage of a blood vessel (usually in the form of a clot) or by breaking of a blood vessel that results in bleeding in or around the brain. The impact of a stroke on you physically and mentally can range from mild to severe. Stroke may affect your ability to walk resulting in the need for a cane, or a wheelchair or confinement to bed or a chair. Depending on the part of the brain affected, stroke may affect your ability to communicate (e.g., speaking and/or understanding.) You may have the supports at home to meet your needs or you may need to live in a continuing care home. How well you recover from a stroke will depend on many factors.

Dementia is a term used to describe the symptoms of many illnesses that cause a loss of memory, judgement, ability to think clearly, recognize people and communicate, as well as changes in behaviour and mood. These symptoms may be temporary and related to another condition, or they may gradually get worse over time. Symptoms can range from mild to severe. You might be forgetful at times but able to have meaningful conversations; you might sometimes not recognize your family and friends, but usually be able to carry on conversations; you might not recognize your family and friends and be unable to have a conversation. In the most advanced stages of dementia you will need 24 hour care.

The most common form of dementia is Alzheimer’s Disease.

Permanent coma is a state of unconsciousness where there is no reasonable expectation of regaining consciousness. You would need to be in bed and receive nourishment through a feeding tube. You would need 24 hour care.

Health Interventions

Antibiotics are drugs that may be provided to treat an infection. For example, a person with a terminal illness (such as bone cancer) may develop pneumonia. Left untreated, it can lead to death. A person may choose to die of pneumonia rather than the terminal illness.

Blood transfusions are where blood is infused into your body through an intravenous line (a needle in your vein).

Chemotherapy is a term used specifically to refer to drugs given to treat cancer.

Defibrillation is where the heart is given an electric shock. Sometimes this is used as part of CPR to start the heart. Other times it is used to make an irregular heart beat become regular.

Intravenous therapy (IV) means that a needle is inserted into a vein, usually in your hand, arm or foot. This needle is connected to a tube that can carry fluids and medications directly into your blood stream.

Intubation is where a tube is inserted down your airway so that you can breathe. If you are unable to breath on your own, intubation may result in the use of a ventilator or breathing machine. Some people may want to be resuscitated, but may not want to be intubated.

A definition of ‘resuscitation’ is included below.

Kidney dialysis cleans the blood of toxins by machine (hemodialysis) or by fluid passed through the abdomen (peritoneal dialysis). It is needed when the person’s kidneys are not working.

Radiation is a concentrated x-ray beam directed at a certain spot (e.g., a cancerous growth).

Resuscitation (cardiopulmonary resuscitation [CPR]) is used to re-start the heart if it stops beating. It includes chest compression, drugs, electric shocks and artificial breathing.

Television shows give the impression that CPR is highly successful, when in actual fact, survival rates are about 0–20% depending on the person’s condition.

Surgery could include minor surgery (such as having wisdom teeth removed or feeding tube inserted) or major surgery (such as having a gall bladder removed).

Tube feeding gives liquid nutrition through a tube into your body. A person who cannot eat or drink needs a feeding tube to get nourishment. The tube is inserted into the stomach either through the nose or a small hole cut into the abdomen.

Personal Directive

I, _________________________________________________, make this Personal Directive.

Name of Maker

This Personal Directive is made pursuant to the Personal Directives Act and takes effect if I am not capable of making a decision regarding my personal care.

I have placed my initials and my witness has placed his/her initials next to the sections in this document that I want to be part of my Personal Directive.

1. Consultation when assessing capacity (optional)

The person making the assessment of my capacity is to consult with the following person when making the assessment.

Name:  ____________________________________________________

Print Name, Title or Position of Individual

Address: _____________________________________________________________

Street Address ___________________________________________________________

City/Town Province

Phone: ____________________Email: _________________________

Home/Business

2. Revoking (Cancelling) Other Directions (optional)

I revoke (cancel) all previous instructions, personal directives, and authorizations, including those made pursuant to the Medical Consent Act.

OR

I revoke (cancel) only the following instructions, personal directives or authorizations:

Date: _________________________________

Description:___________________________________________________________________

_____________________________________________________________________

_____ _____

Witness’      Your

Initials        Initials

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 1 of 7

3. Authorization to Act as Delegate (optional)

I authorize the following person to act as my delegate to make personal care decisions on my behalf for all personal matters, of a non-financial nature, that relate to me.

Name:_____________________________________________________________

Print Name of Delegate

Address:_____________________________________________________________

Street Address

_____________________________________________________________

City/Town Province

Phone:____________________ Email: _________________________

Home Business

If my delegate is unable, unwilling or unavailable to make a personal care decision, I authorize the following person to act as my alternate delegate.

Name:  __________________________________________________

Print Name of Alternate Delegate

Address:  ________________________________________________

Street Address

_______________________________________________

City/Town Province

Phone____________________ Email: _________________________

Home Business

OR

I want to authorize more than one delegate to make different personal care decisions on my behalf. I authorize the following individuals to act as my delegates and alternate delegates (if the delegate is unable, unwilling or unavailable to make a personal care decision) to make personal care decisions on my behalf for all the following personal care matters, of a non-financial nature, that relate to me:

health care ____________________ __________________________

Name of Delegate and contact information        Name of Alternate Delegate and contact information

home care services ______________ __________________________

Name of Delegate and contact information Name of Alternate Delegate and contact information

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 2 of 7

accommodation, ________________ __________________________

including placement Name of Delegate and contact information Name of Alternate Delegate

in a continuing-care home ______________________  ____________

with whom I may _______________ __________________________

live and associate Name of Delegate and contact information Name of Alternate Delegate and contact information

participation in __________________ __________________________

social activities Name of Delegate and contact information Name of Alternate Delegate

and contact information

participation in educational activities  __________________________

Name of Delegate and contact information Name of Alternate Delegate and contact information

participation in employment activities ______________________

Name of Delegate and contact information Name of Alternate Delegate and contact information

other personal care matters as follows: __________________________  _______________________

Name of Delegate and contact information Name of Alternate Delegate and contact information

4. No Delegate Authorized (optional)

I DO NOT wish to authorize a delegate, but have provided instructions in section 5 for persons who intend to provide personal care services to me.

5. Specific Instructions (optional)

I instruct my delegate(s) to carry out the following specific instructions when making decisions about my personal care:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

additional page attached?  Yes   No

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 3 of 7

If I have not designated a delegate(s), or if my delegate(s) and alternate delegate(s) are unable, unwilling or unavailable to make a personal care decision, I instruct all persons who intend to provide personal care services to me to follow the following instructions that are relevant to the decisions to be made:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

additional page attached?  Yes  No

6. Other Information (optional)

I provide the following information to help my delegate(s) or statutory decision-maker understand my values, beliefs and wishes when making decisions about my personal care:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

additional page attached?  Yes   No

7. Instructions about Statutory Decision-makers (optional)

I DO NOT wish to authorize a delegate and am comfortable with a relative authorized under section 14 of the Personal Directives Act making decisions on my behalf about health care, home care and placement in a continuing care home, except I DO NOT want the following relative(s) making decisions on my behalf:

___________________________________________________________________

Name Relationship

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 4 of 7

8. Consultation when Delegate Making Decisions (optional)

My delegate(s) is to consult with the following person(s) when making decisions about my personal care.

Name: ___________________________________________________

Print Name of Delegate

Address: _________________________________________________

Street Address

____________________________________________________________

City/Town Province

Phone: _____________________ Email: ______________________

Home Business

9. Notification (optional)

If it is determined that I lack capacity to make a personal care decision, I instruct the person making the determination to notify me, the delegate(s) I have authorized in this Personal Directive, if any, and the following people:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

If is determined that I lack capacity to make a personal care decision, the following people are not to be notified of the determination:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

10. Compensation for Personal Care Services (optional)

My delegate, __________________________________________, is authorized to [Name of Delegate] receive compensation for providing me with personal care services on the following terms:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 5 of 7

11. Remuneration for Delegate (optional)

My delegate, __________________________________________, is authorized [Name of Delegate] to receive remuneration for exercising his/her authority under this personal directive on the following terms:

___________________________________________________________________

___________________________________________________________________

___________________________________________________________________

12. Signatures (mandatory)

Signed by me in the presence of my witness at _________________, in the Province of Nova Scotia, this ______________ day of ___________________________, ___________.

Day Month Year

Printed Name of Witness _______________________________________________________

Printed Name of Maker Relationship to Maker ______________________________
 
Signature of Maker in the presence of the Witness Signature of Witness in the presence of the Maker _______________________________________________________
Street Address Street Address_____________________________________
City/Town City/Town ________________________________
Province/State __________________________________________________
__________________________________________________________________________
Home Phone Number Business Phone Number Home Phone Number Business Phone Number

_________________________________ _______________________

Email                                                                        Email

_____ _____

Witness’ Your

Initials Initials

Rev. 03/10 Page 6 of 7

OR (where Maker physically unable to sign)

Signed on behalf of the Maker, ______________________________, in the presence of the

Name of Maker

Maker and in the presence of the witness at _______________________, in the Province of Nova Scotia, this ______________ day of ___________________________, ___________.

________________________________________  ____________________________________
Print Name of Person signing on behalf of Maker Print Name of Witness

_________________________________

Relationship to Maker

_________________________________ _________________________________

Signature of Person signing on behalf of Maker Signature of Witness in the presence of the Maker in the presence of the Maker _________________________________ _________________________________

Street Address Street Address _________________________________________
City/Town City/Town  ________________________________________________
Province Province  ___________________________________________________
Home Phone Number __________________________
Business Phone Number ________________________
Home Phone Number ____________________________
Business Phone Number_________________________________
Email Email __________________________________________

Rev. 03/10 Page 7 of 7

Notes

Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hopeforher Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2011 at 11:29pm

Hello all... I haven't been on this website in many months but it's October. Pinktober. The month my mother was diagnosed with Stage 3 TNBC. This October is especially hard because my mother passed away last December so breast cancer awareness month is kind of a slap in my face. I'm aware. Really I am. So your asking... "Why are you on this particular thread?". I am on this thread because my mother died in the hospital with many goodbyes never said. The hard questions were never asked. She was 57. Her youngest child just 20. Dying was never discussed. Not even with her doctor. He adored her and he knew how much it would upset her. She didn't want to talk about because it was never going to happen to her and it was scary. She was a divorced woman who lived alone. I am her oldest daughter. She had no advanced directives. She had never discussed the what happens if or when. I am not going to get into the details but we ended up placing her on a vent and then taking her off two weeks later. Every day I question the decisions we made in that hospital that day. I play out the scenarios in my head a hundred different ways. Occasionally I still have bad dreams. I wish I would have been strong enough to talk to her and ask the hard questions. My point to this posting is to ask the hard questions. I would have loved Palliative care for mom. Maybe she would have refused hospice and i would be okay with that. I wanted to fight too! But i would have loved to have someone there who knew the right things to say when i couldn't find the words. I am so sorry if this post is hard to read. Sometimes mom would come to this website and read the posts. Sometimes the posts would upset her because she was scared. I don't mean to upset anyone. I just wish i had some time back with my mom. There was so much I wanted to say. Palliative care would have been so helpful and Hospice too.  Thanks for listening.

For my beautiful mother age 55
IDC 7cm Triple Neg Dx 10/08
ACx4, Taxol x4
L Mastectectomy 4/09
3 nodes positive
Radiation finished 7/09
Malignant Pleural Effusion 11/09
In treatment again
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 12:43am
Dear Hopeforher,

You have my sincere condolences for your loss and for your continued pain.

Thank you for sharing what is in your heart. This forum regarding Hospice is intended to be a place of peace and a place of love..a place where you can come as you did this evening and know that you are safe with your thoughts and not alone and know that you are not the only one who would like to be able to magically go back....for so many, many, many reasons.

I was 20, and a only child, when my mom passed from Metastatic Breast Cancer at the age of 46. She is still present in my life. She graces me with her presence, still, and I believe always will.

I would like to tell the docs with 20-20 hindsight that the prophylactic hysterectomy they performed on her to “stop the cancer from spreading” was ridiculous. It only accelerated the spread and she was gone in 28 days. No one spoke to us of palliative care or hospice, either. I find that today, some 47 years later, many physicians still do not talk to their patients about it.

My pain started 50 years ago and unfortunately, at times, the pain is still raw. I was out with an oncologist last night, in Houston, and we had dinner together and I spoke about my mom and all of a sudden the dam broke and I couldn’t finish my meal. That has not happened in a very long time and I think the stress I have been under recently, having lost some dear friends, plus the palpable compassion and understanding of, what I believe will be, a new friend (at least it feels that way) made it easy for me to let go because I felt ‘safe.’ This lovely woman ‘got it.'

I think what is important for both of us is to try and concentrate on today and tomorrow and also to 
try to find the beauty in each day. I am afraid that, if my experience is shared by many, and I believe it is, a part of us may always be in mourning and always be in pain. I think for most it is sublimated, but it is there.I think, at times, a good therapist can be tremendously helpful and there is no shame in seeing a bereavement counselor or other professional. That is one of the things about palliative care, in general, that many folks are not aware of. Psychological help is part of the services that are available to a family as is spiritual help, if you would like. I am not sure that “time heals all wounds.” That has not been the case with me. Yes, time can help, but, at least for me, there is still a component that is ‘raw.'

Please try to focus on the positive memories you have of your mom and I am sure there are many.

I believe this thread is important because our wonderful family members will not come on it, and be scared, because I feel most folks have some idea what hospice means and if they want to avoid the topic they will not open the threads.  

I also believe that in the next months our collective knowledge about palliative care in general, and hospice specifically will perhaps be increased and that, unfortunately, is important because the need continues to be there in our community..This thread is designed to be a resource for those who need it. Hopefully, as time goes by, more folks may post what is in their hearts,even though it may be painful to do so.

Again the palliative care forum was split into two sections for a reason...Palliative Care-support services encompasses many important issues that include pain management, nausea, breathing difficulties etc and hospice is end-of-life care. Both are important. A patient, according to NCCN guidelines should be introduced to palliative care early on...but, from my experience, rarely is.

I am hoping this will be a place for folks to come and share their hospice experiences or as you did share the absence of palliative care..both as a support service and/or later as hospice

Is it a topic that most here would like to talk about? I don’t think so, but it is an important subject and I believe the TNBC Foundation has shown great intelligence and wisdom in incorporating the palliative care forum into this wonderful resource of ours.

If the whole hospice discussion is, understandably, too difficult to contemplate please don’t read the posts but I think it will be an important resource for those who are interested...and that interest does not have to be solely, a TNBC issue...there are many times in our lives, especially as we age. that we will see more end-of-life experiences.

I am hoping this will be a forum of peace, of love, of understanding, of compassion and perhaps for some, a place to learn.

Thank you again for sharing...Perhaps writing about your experiences helped you and will help others. I hope so.

with my love,

Steve




Edited by steve - Oct 09 2011 at 1:46am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 4:27am
Steve, 

I don't know if i will have the courage to read this thread very often but it is beautiful work you all are doing with love and compassion. My MIL is still living after having breast cancer 33 years ago.

My dear, wonderful,  FIL died suddenly in 1993. It was devastating to all of us  - there were no plans made in advance. In our grief we had to go pick out the casket, buy the burial plot, look for paperwork and so many other things. I still cry sometimes and so does my husband. Grief encompasses so many feelings. My first feeling when he passed was anger - i was angry with him for not taking care of himself and seeing about the arm and chest pain he had been having...and yet, i understood why he chose not to attend to things.

 He was a WW11 Navy veteran who was blown up in the bottom of his ship at the Battle of Normandy and never knew how he got out until a freak meeting in downtown Nashville one day while shopping with my MIL. He saw a man on the elevator who looked vaguely familiar. It turned out to be a man from his ship that got him out after he lost consciousness. (He  was working as a pharmacist mate). He had a long recovery before and after he got back to the states but went back to school and got his GED, enrolled in college, got his doctorate in pharmacy, got married and raised 7 wonderful children...yet, he was always very claustrophobic and didn't want to stay in hospitals etc. He even had a tumor removed from his face at Vanderbilt one year and wouldn't let them put him under - he did it with a local and enjoyed a glass of whiskey afterwards in his hospital room! His surgeon said that any man who could do that deserved a drink!

I have always said to myself that I would prepare so my family didn't have to experience that but I find after having had cancer that I am afraid. I have no evidence of disease at this time but it all really makes me think and pray that I will do the best thing when or before my time comes...and it may not be from cancer. 

Thank you again for sharing, 

Blair
Lump found 11/08 @51
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad., No recon. NED 1/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 10:58am
Dear Hope for Her & Cheeks:
 
Thank you both for posting your journey with end of life issues and Palliative Care.  There are so many times when Palliative Care is the answer to our dilemma with pain like Steve has said for comfort management and the support to ask these hard questions. 
 
I was fortunate, my Mom & Dad and I had an open relationship so that we spoke of everything, decisions, where, and what to do.  I was always the kid who asked why so they knew they must tell me why.  It was difficult to broach these questions but they needed to be asked and we knew it would help me make decisions when the time came. 
 
I was the oldest of three.  It was my job to be there for both parents, a step mom and many friends, to help make decisions, when it was time for Palliative Care, Hospice, make arrangements, choose a vessel, prepare for a mass (Roman Catholic), find the priest, readers, etc.  All were done to perfection with no regrets and this is why the Foundation has opted to create a forum on this site to allow others to read how they helped those who are afraid to ask the "hard" questions, to find out what preferences our loved ones have; and to do this before illness is ever is spoken about! This is the key.  Preparation for all allows us to grieve during the process of instantaneous death or prolonged journey.  It helps everyone on the journey of life and death and especially if we have preferences or because of our religious beliefs, certain things have to be done right. 
 
The opening questions are the most difficult but once the door is open, the rest comes easy.  Trust in the process.  Maybe begin with a scenario of a friend who has been ill or had just had a heart attack and that made their life flash before their eyes and to know that their needs need to be stated in a Personal Directive because maybe the decisions others make for us are not the ones we really want.  Making these decisions takes the burden off of our caregivers and the ones left behind and will especially release any guilt that may arise out of those decisions.  If they decide they are totally against discussion then there is not much one can do but listen to how they talk about other people who have the same issues and what they say may give you an indication on what they want or don't want.  Other than that, as Steve has said "get a counsellor or mentor and discuss your feelings and be open with that person."  We should in no way have any guilt because someone else could not discuss what they wanted or knew what they wanted.....
 
Have no fear, if we do our best at anything, that is all we can do.  Guilt is something that can eat at us for the rest of our lives and it does more harm than good. Put that Guilt in a box or write it on a piece of paper, either bury it or burn it and move on with your life knowing that you did the best you could with the knowledge you had. 
 
You see Knowledge is POWER and we all need to put our thoughts and wishes in writing to give the ones we leave behind the POWER to live their lives freely of guilt or wondering if they did the right thing. 
 
I say these things in love and concern for all.  It has been my life's journey for the past five years to create a package for everyone to use in making their wishes clear and concise for their loved ones who are the caregivers and need the POWER & KNOWLEDGE to carry out wishes of those they love who cannot speak for themselves. 
 
Use this forum to work through what it is you need to do for yourselves and your loved ones.  
Everyone needs to make their own decisions and they can be changed whenever we wish so that we don't leave others to guess what we want.  Communication is so important in any relationship and open, honest communication is the best.  It can connect you on such a deep level that the blessings and freedom of knowing you did you your best is awesome. 
 
Years ago, this was never discussed and just taken for granted that whatever was done was right, but then again, we did not have the life supports that we have today, which makes decisions that much more difficult.  We must live our life as a journey and we must plan for our dying process the same way.   
 
This note is being sent with love and gentle hugs, Helen in NS


Edited by TNBC_in_NS - Oct 09 2011 at 9:24pm
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Dear Blair,

wow, what a story with your FIL. and what a remarkable man to go from a GED to a doctorate. I know it may sound a little strange but your telling us that you and your husband still cry, at times, about a loss from almost 20 years ago gives me some comfort regarding my tears. 

About 3 years ago I lost a very dear, lifetime, friend. I visited him a few days before  he passed and he told me about his daughter XYZ. I thought he might have been suffering from dementia at the time and told him "you have never spoken about XYZ before" and he said “yes, my daughter ABC was a twin and her sister passed at the age of 3 from pneumonia...I was 21 at the time...and I never told you because it was too painful to talk about...but I want you to know now” and then he cried uncontrollably for several minutes.

So here it was, almost 60 years later, and the grief he had sublimated for such a long time came out. I think that, somehow, in his final days it was important to hm to share what was in his heart with me. He actually told me when his crying subsided, “I feel better that I shared this with you.”

Blair, you wrote “I have always said to myself that I would prepare so my family didn’t have to experience that but I find after having had cancer that I am afraid.” I think that you should be kind and gentle with yourself now and if you find that you are too afraid you should respect that but you may be able, with the help of a trusted loved one, to make some small steps slowly to ease your family’s burden and it may be easier to do when you are NED. I think, in principle, it is good for all of us, even while healthy and perhaps never had cancer to had an Advance Directive (AD). I have never had cancer and have had on for many years. It is merely a way to let your loved ones know what your wishes are. If a written document is not in place decisions may be made that you would not agree with but because your wishes were not made in writing they may not be followed. It will give your family guidance, when needed and hopefully that “when needed” will be decades away. It is actually possible that after you do memorialize your thoughts you will actually feel relieved even though the process was difficult to do...and if it is all too hard, maybe a counselor could help? Still not convinced, again I suggest, please be kind and gentle to yourself and deal with it on a timetable that is comfortable to you. I believe at some point you will help guide your family to your wishes.

thanks for sharing, Blair,

Steve

p.s. when my mother passed, I had about $200 to my name. I had no brothers or sisters and I asked my grandfather’s brother the following question, “if I don’t have a will who will get my money?”...he replied “your father.” “well, I haven’t seen my father since my parents divorced when I was six and I don’t want him to get a penny. I want all the money to go to my grandmother (she was not my ‘natural’ grandmother. my natural grandmother passed when I was two from ovarian cancer. she was my grandfather’s second wife and I adored her).” “Steve, all you have is $200 it will cost you more than that for me to draw a will for you..I would forget about it.” and then he looked at my face and said “I adored your mother...and I know how you ache...I will make a will for you as a gift to her....” and he did. Of course when I married three years later I changed the will. Geez, this is quite a place. I have never told that story, but somehow I am comfortable enough to tell my TNBC family.



I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 8:37pm
Dear Steve and Helen, 

Thank you both for the replies. 

 
Steve, thank you for reminding me to be kind and gentle with myself. I know I will get there. The story about the will was wonderful and I am glad you shared with us. 

Blair






Edited by cheeks - Oct 10 2011 at 1:06am
Lump found 11/08 @51
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
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A/C x 4, No rad., No recon. NED 1/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2011 at 8:46pm
pss: As you can imagine it was difficult for me to let others "be in charge" while I was ill but I really did try! Lol
Lump found 11/08 @51
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad., No recon. NED 1/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 4:15am
Thanks Steve,

And the board for having this discussion thread, it is what I noticed was missing when I first discovered this site many years ago.  My wife's friend's mother was breast cancer free for ten years and then cancer was discovered in her body again and her mom decided that she could not go through treatment again and told her daughter that.  Michelle realized that her mom's decision was final and she could only go along with her mom's wishes.

Her mom lived another ten months most of which was spent at her home, and she was very happy to be in familiar surroundings.  Hospice care workers would come to the house and look after mom, and was there when God took her to heaven.

This section could be a great help in instruction on hospice care, and what to expect when that time comes and decisions need to be made.  I believe that Michelle's mom had the courage to live her life the way she wanted and I respect the decision she made.  I just wanted to say, "thanks" I know that you put a lot of time and effort into making this the best site for TNBC on the web.

I applaud you and the wonderful board for this fantastic resource made available to those with TNBC around the world.

Mahalo!

Dave
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 8:09am
Living Beyond Breast Cancer (LBBC) Teleconference Series on Palliative Care.
http://lbbc.org/Events/2011-10-24-Living-Well-with-Metastatic-Breast-Cancer-Part-2?tr=y&auid=9659066

The Role of Palliative Care: Exploring What’s Meaningful for You

When:   Monday, October 24, 2011 
12:00 p.m. - 1:15 p.m. EDT


Register now for this free two-part teleconference series on living well with metastatic breast cancer.

Download a flyer for Part 2 of this teleconference series.

Learn more about Part 1 of this teleconference series, Living Well with Metastatic Breast Cancer: Understanding Your Treatment Options.

In the second teleconference of the series Jamie Von Roenn, MD, will explore the benefits of palliative care and the ways to discuss your options with your healthcare providers. During this teleconference, you will:

  • Find out how palliative care can be part of an integrated approach to treatment
  • Understand how palliative care differs from hospice care
  • Learn how a palliative care plan supports your quality of life while addressing your physical, emotional, social and spiritual needs
  • Explore ways to cope with your reactions and the reactions of those you love around the often difficult feelings associated with palliative care

About Our Speaker

Dr. Von Roenn is a professor of medicine at Northwestern University’s Feinberg School of Medicine. She is a medical oncologist and expert in palliative medicine. She is medical director of the palliative care and home hospice program at Northwestern Memorial Hospital and a full member of the Robert H. Lurie Comprehensive Cancer Center at Northwestern University. Dr. Von Roenn is board certified in internal medicine, medical oncology and palliative medicine.

Her clinical and research interests focus on breast cancer and palliative care, particularly the impact of treatment on disease-related symptoms, and she has published extensively in these areas. She is committed to educating and teaching in the field of palliative medicine, serving as director of the palliative medicine fellowship training program at Northwestern and spearheading efforts throughout Northwestern to incorporate palliative medicine into the medical school curriculum and internal medicine residency training.

About the Program

Our speaker will give a brief presentation followed by a question-and-answer period. To participate, you need only a telephone or computer with Adobe Flash Player or Windows Media Player. Social workers may be eligible to receive continuing education credits; see our registration form for more details.

This program is sponsored by Bristol-Myers Squibb.

You may also be interested in October Ask the Expert: Metastatic Breast Cancer Treatments and Strategies.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 8:25am
Thanks for posting, Donna...

Looks like an informative teleconference..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2011 at 1:54pm
I thought this was a good blog, by Paula Span, from the NY Times-

with my love to all,

Steve

http://newoldage.blogs.nytimes.com/2011/12/14/plain-speaking-at-the-end-of-life/?scp=1&sq=Paula%20Span&st=cse


  

> Plain Speaking at the End of Life

> New York Times
> December 14, 2011

> By PAULA SPAN

> Dr. Stephen Workman, an internist at the Queen Elizabeth II Health Sciences Center in Halifax, Nova Scotia, takes exception to the language physicians use with patients near the end of life. In one of his recent publications, he called language the most important tool health professionals have to improve the care of dying patients.

> I wanted to know more about his ideas, so we spoke by phone.

> Q.You've decried the way hospitals and their staffs treat the dying, calling it "an avoidable tragedy." Why does that happen?

> A.The system is geared for intervention. The narrative of medicine, the stories doctors love to tell and patients love to hear, is that we can identify the problem and fix it. It's hard to say when that's no longer true, but there comes a time for all of us.

> If physicians challenge their belief that they can cure everyone, they will identify a lot of people who are dying or at risk of dying. And generally care gets pretty rational after that. Once we recognize that someone is dying and that dying people have a claim upon us, things usually become more humane and compassionate.

> Q.Can language make that much difference?

> A.You're always struggling against expectations. Something else can always be done; there's always another test and another treatment. So it's important to let people know when we foresee death.

> When I see patients who I think are at risk of dying, I say to the family and patient, "You could die during this hospital admission. Is that something you've been thinking about?" Then you can go forward and ask, "What have you been thinking, and what are your expectations? " When you plant the seed that death may be the outcome, people have more acceptance.

> They can initially be very shocked: "My goodness, I never knew he was that sick." They need time to come to terms with it. So you give them more time, rather than tell them in the I.C.U. that it's time to turn off the ventilator.

> If you support them and attend to their needs, most patients and families are very accepting.

> Q.You specifically say someone is dying?

> A.If death is such a terrible thing that I, the doctor, am unable to face it, then I'm asking too much. If I can't talk openly about dying, how can my patients and their families bridge that gap?

> Q.Why do you disapprove of the more standard approaches? Doctors often say someone is "doing badly" or is "seriously ill" or "critically ill."

> A.They're true. But if you say, "Your father may well die," you will get a different response. When you tell someone that, you create a moral obligation to deal with the fallout, the tears and grief and anguish.

> Attempting to avoid that is like wanting to do surgery but not ever wanting to see a patient bleed. You can't give honest, compassionate, effective care if you're not comfortable seeing someone cry, and you'll never give good care at the end of life.

> Q.You've written about your preference for telling families that treatment hasn't been effective.

> A.We have to acknowledge the impotence of our attempts at some point. "We're not winning. The treatment's not working. She's dying despite our best efforts." People understand if you make it clear that treatment has failed. It's not that we're giving up; it's that we really tried, and we can't save her.

> Q.But you'd rather not say, "She's failing to respond to treatment." Why's that?

> A.Because it's shifting responsibility. "The patient is failing to respond" — that naughty patient! As if a good patient would get better. I prefer, "Our treatments aren't working." That puts the responsibility on me.

> Let's acknowledge that the human body is incredibly complex and our treatments are simple and only work sometimes. The problem is not the patient; it's our technology. Let's be more humble.

> Q.Similarly, you don't speak in terms of "switching to comfort care."

> A.I don't switch to comfort care. I discontinue any treatments that don't contribute to comfort. Because if this is the day you're switching to comfort, what kind of care are you switching from? A patient's symptoms, like pain or shortness of breath — weren't those important yesterday?

> There is no switch. We are always providing comfort care. We're going to stop the things that don't help you be more comfortable. Once you acknowledge that a patient is dying, nobody says, "Continue doing the things that hurt."

> ------------ --------- --------- --------- --------- --------- -

> Paula Span is the author of "When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions."
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2011 at 2:33pm
Thanks Steve, that was an excellent article! And not to mention from Nova Scotia too!
 
I wish all the doctors were more open with their patient when the end is near.  Time is all we ask for and if they know TIME is not going to be there, then I believe it is their JOB to tell the patient and the family so the patient & family can get their Communication in order for themselves and all involved.
 
Thanks sweetie! My brother from another Mother in the West! h.
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2011 at 7:29am
some more articles from the NY Times-


Please note one of the articles that appeared in today’s NY Times where a hospital stay that would entail artificial means of life support would be paid for by the insurance company but unless a hospice facility was convinced that the patient would pass within six days the patient would not be admitted.

The article is entitled Looking for a Place to Die


If any of you are reading this and trying to figure the mechanics of in-patient hospice out one of the best resources, I have found, are the social workers who can come to your home during the ‘home hospice’ phase. They should know all the rules in your particular State and also may be able to suggest a nearby facility when that is deemed necessary.

from personal experience this can be a very difficult time to try to convince a facility that death will occur on a timeline that is acceptable to them. 

A few years ago I got involved with my ex-mother-in-law’s final journey. We had maintained a good relationship, despite my divorce from her daughter, and my incredible wife supported my efforts to help her. For about six weeks she had home hospice but caring for her (she lived alone) became too difficult.
She was admitted to a nearby facility that was in-patient hospice and she joked with some of the nurses about how badly the Yankees were playing. It was her effort to get to know the staff and be friendly with them but the social worker came to me at the end of day one and said “this woman is not sick enough...she has to pass away in six weeks (not days like the article above) and we are sending her home tomorrow. I knew she was failing but they didn’t and they would not listen to me....”You can bring her back when she is closer to the end.” I called a dear friend in Napa Valley who is a hospice nurse and she gave me good advice that I used next day..

The social worker greeted me and said “we have her ready to go home” and I said “no, we are requesting a hearing about your decision to release her. we don’t agree with what you are doing and we are exercising our right to a hearing.” “that will take at least a week.” “yes, I know and in that week, you will see that she is failing.” She was not a happy camper and said “you don’t need a hearing, she can say and we can talk about this again in another few days.” A few days later, she came and apologized to me and my ex-MIL stayed and passed about ten days later.

I am not making any recommendation about home hospice vs in-patient hospice. Every family’s situation is different. I have seen some families set up virtual hospital-like facilities with around the clock RNs and a physician that came in regularly to visit the patient. It made it more comfortable for the patient and three of the patient’s daughters set-up a schedule so that their mother was never alone. That was inspiring to see and fortunately the family had the financial means and the desire to do it. Most families cannot afford to do that and often family members are not equipped to properly care for a loved one who is sinking and when things reach a certain point (and generally the hospice nurses can guide you) you can go to an in-patient facility. 

Another thing I earned on this journey a year ago was that when the patient fell and hurt herself it would have been better to have her admitted to an acute care hospital and then have her sent from that hospital to the nursing home because there are certain rules (at least in California) where insurance will then pay the cost of the nursing home for 30 days.

Again, every state is different but it may be helpful, financially, to be aware of this....and it also may be difficult to get your loved one admitted to a acute care facility hospital. Often they want to treat a patient in a situation like this as an outpatient only.

It can be a maze that a caregiver does not need during times of acute stress when a loved one is sinking. If you have the strength to do some preparation work when there is no imminent emergency it may help you know what to do when the time comes. 

The logisitical components of all this can be extremely stressful as can family dynamics when certain family members argue for X,Y or Z but are also not willing to participate with their time, their homes or their money. I have seen some ugly battles. Again, not what is needed during dire times for the patient.

all the best,

Steve










Edited by steve - Dec 22 2011 at 7:30am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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