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Some additional thoughts on hospice

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    Posted: Oct 14 2012 at 7:55pm
Dear Rachel,

I am addressing this to you in response to your request for information about hospice in your thread yesterday...Mom's update and it's not a good one.


First of all, I specifically wanted to thank you for sharing your mother's journey with us. I know, from our many talks, how difficult this journey has been for you and I thank you for your permission to let me use this Hospice forum to respond.

I think the decision to stop treatment is one of the most important decisions a patient/family can make and it is often made without the full support of the oncologist which makes it extraordinarily difficult. 

I asked one of the leading pancreatic cancer specialists in this country how he talks to his patients about home hospice/in-patient hospice and he told me "when I feel the chemo is doing more harm than good I suggest to the patient that treatment be ended and many patients don't want to follow that advice but some do and I feel it is a wise choice." 

I have never forgotten his "more harm than good" perspective and have tried to mention that option to many patients I have worked with and to be honest I have had very limited interest in that concept. But, once in awhile, a family like yours makes the agonizing decision to stop treatment and start a home hospice program.

There are some very important things I would like to mention-

You need an evaluation done of mom's condition by a hospice physician and nurse. Your mom will be assigned a team to work with her. In my opinion, no one with cancer should have to suffer from uncontrolled pain and the hospice professionals should know what to do for mom. Instead of the oral medication you mentioned at some point a pump may be ordered so that mom can self-administer the morphine or other drugs to alleviate pain. I would suggest you have frank discussion with the hospice professionals and find out how they decide when to start this procedure. The increased level of barbiturates come with a price. It is normally a given that the drugs will slow the patient's digestive process and cause constipation that will have to be handled with medicine.

A pain management specialist, who I deeply respect, told me "it is most important to manage the pain and we have different drugs to manage the constipation." You do not have to be in horrible pain if you have terminal cancer. The other side effect of the drugs can be a loss of alertness and lethargy.

Another problem in the end-of-life process is a loss of appetite. It is my understanding that it is the body's way of preparing for the end. For most families it is horribly difficult to watch a loved one lose a lot of weight and not have an appetite. After-all, from the beginning our inclination is to nurture and nourish our children and ourselves. It is not 'natural' for us to be willing to let a patient not eat/drink even though the patient may have no desire to do so. Generally, although I have seen some exceptions, the idea behind hospice is to not prolong life through artificial means and that has to be understood by the patient and the family. Much easier said than done from my experience.

It also has to be accepted that normally there are no trips to the emergency room when the patient is in hospice. Again, hard to watch as a loved one and, often, hard to experience as a patient.

It is important that your mom be as safe as possible. That may entail having a hospital bed brought in and a portable commode and eventually only a bed pan may be used. It is extremely important that the patient be helped to the bathroom or commode and family members/friends must be alert to the fact that the patient might fall and break a hip fracture a wrist arm etc. Often patients may be disoriented from the pain meds or just extremely weak. Please do not let her manage her bathroom activities on her own, if that is possible.

If you can afford to get a professional nurse's aide who is familiar with end-of-life care that would be an important addition to the household. At some point, it may be impossible for your dad or you to properly take care of mom's needs.

As we discussed, one of the important plusses of mom having a home hospice team is that she will hopefully come to trust them and when the time comes when a transition to in-patient hospice is advised you will feel more comfortable as a family.

A social worker should be assigned to your family and the maze of regulations explained and that professional may also help you with psychological support services. A special therapist may also be available in certain instances.

Spiritual support can be an extremely important part of this journey and I would encourage you, if it is appropriate, to have mom receive support. Often various churches or synagogues will have people who are willing to pay the patient a visit. Or perhaps there are meditation techniques that can help.

One woman I helped really benefitted from a music therapist. She had been an active member of her church choir for most of her life and also enjoyed playing the guitar. A young man came to her house
and played the guitar and banjo and sang for several hours. She told me afterwards with a laugh, "Steve, I should have started hospice sooner." I still remember that laugh.

I would also let loved ones honestly know what the situation is and with you mother's guidance, if appropriate, encourage visits sooner than later. From my experience some family members/friends will step up and be supportive and others will disappoint. I would not expend any effort on those who disappoint. They have their own reasons for not engaging and I have found it an extremely upsetting effort to try, as I did, to convince a son to see a dying parent because "I don't want to remember her that way."

Rachel, many of these thoughts may not apply to mom and they are my personal opinion. You should rely on your hospice team and also your own good judgment and of course what you parents want.

I have also seen family members not honestly tell a patient what is going on. A dear friend of mine who is an oncologist on leave from a Western country to Singapore went on rounds and told the interpreter
"please tell this patient that unfortunately there is nothing we can do for her...she is dying" and the interpreter told my friend "Doctor the patient doesn't even know she has cancer." True story.

My feeling is, and again you know your mom/your parents best, that a patient is entitled to the truth so that patient can make their own preparations for the end.

Finally, there are books that may help you in this journey. We have spoken about Dying Well by Dr. Byock. There is another book by my friend Dr. Ken Doka (who happens to be a Lutheran Minister)
called Counseling Individuals With Life-Threatening Illness

There is also a book/CDs called Graceful Passages that you may find helpful and your mother may as well. It contains religious and secular thoughts and though everything will probably not resonate with you, something may.

I again would like to compliment you on who you are and how you have intelligently and lovingly tried to help your mom.

Rachel, I hope that you will continue to post on this thread about mom's journey. As we discussed your experiences may help others and that is what this forum is all about..Also, I know this is a subject that many do not want to read about or post about for a variety of reasons but I feel that this forum can help some folks deal with what is, all too often, the reality of this miserable disease. 

Perhaps some of my words may seem cold to some. I hope not. I fully recognize the sadness experienced by an end of life journey. Just trying to respond to your request for advice. You told me that this is your first hospice experience and Rachel, please know, that my heart goes out to you and your family and will remain with you and all here, always.

Please know that I am always a phone call away.

Again, it is truly an honor to know you. You have deeply inspired me with your devotion to your mom.

warmly,

Steve 










Edited by steve - Oct 15 2012 at 1:34am
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 rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2012 at 4:10am
Thanks so much Steve for all of the info above. 
I've personally renamed Hospice to "comfort care" for my mom's sake because everytime she hears that word she cringes!!  I've also said to her "we are calling in for back up" and that makes her laugh.
Now that Mom's pain is better managed her spirits are improving. 
Although since it's October all the "breast cancer awareness" commercials that come on TV are enough to make me go nuts.  This month everything is all Pink and you can't check out at Safeway without someone asking you to donate to the cause.  I know its coming from a good place but it does make this month hard.  Thanks for everything you do for this foundation!!!
Rach
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2012 at 8:39am
Dear Rachel,

Thanks for writing and thanks for your recommendation of 
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying [Paperback] 
By: Maggie Callanan,
                 In searching I also found another book, also by Maggie Callanan called 


"Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life

It is quite possible that some of the Final Gifts book is duplicative to Final Journeys but I ordered both because I am helping several families now who could use this help, as can I personally, so I want to see if there are enough differences to suggest both books to them. I will post here with my thoughts.

Rachel, your idea of comfort care is an excellent one. It is very unfortunate that the words Palliative Care are most often associated solely with Hospice when there are so many supportive care services that are also part of palliative care and that can be utilized while a person is still on chemotherapy. Various institutions around the country continue to struggle with a better name.

What is very special is that you and your mom have been able to retain a sense of humor even in the face of this difficult journey. I find that a sense of humor is truly, truly a gift and the fact that your mother is more comfortable due to the pain meds probably enhances the ability to maintain a sense of humor. 

I am very glad you are getting to spend special time with her now. As I have mentioned privately and publicly to you...I think you are a lovely woman and a very special daughter. I do not take for-granted your desire to be with mom on this end-of-life journey. For whatever reasons, I have seen other families where that does not happen. I think being fully engaged with a loved one who is going through chemo can strengthen an already existing bond. The four months I spent with my daughter going through chemo with her I believe was perhaps the most important time we ever spent together. Thankfully, she is NED now. 

Similarly, being with a loved one through the final journey often, also, brings a new level of closeness. It can be a gut wrenching experience for both parties on many levels but I also feel it can be a spiritually rewarding experience for both parties. Surrounding a loved one with love in the final months, weeks and days I believe nourishes both souls. And I have experienced things that I have no rationale explanation for. Last year, the doctors told us that our dear friend was comatose and could not understand anything. And for the most part it seemed they were correct. But at one visit I gently squeezed her hand and said "I am here A. and I love you. If you can feel my love please squeeze my hand." She did and I instantly lost it as did her husband who was holding her hand on the other side of the bed. She then squeezed his, at his prompting. You just never know what expressions of love make it through, at times. And, for a certain period of time, she had a radiant look of peace about her. That is the only way I can describe it. To be honest, I have not seen that since but it was there. 

Rachel, I also feel it is important that you try your best to also take care of yourself on this journey. I took a class last year called "Care for the Caregiver" that I felt was very helpful. I am not embarrassed to share the fact that I really needed the help. Still do.

There is a wonderful organization called ADEC (Association for Death Education and Counseling) that I have joined. If anyone is interested I would encourage you to look at it.


Their annual convention in Hollywood, CA is in April 2013 and I will be attending the two day pre-conference workshop as well as the conference. If anyone decided to come, I would be delighted to meet you and share a meal. Just please send me a PM so we can make plans.

I would encourage anyone who would like to share their thoughts to please do so. That is one of the reasons this forum is here. I fully realize that many folks do not want to read this forum or post their thoughts;  they  prefer to keep them private. I find that my sharing experiences with others at ADEC has helped me understand that my experiences, while seemingly unique to me (and of course what we feel is unique to all of us) is shared by many and that sharing brings a special understanding/relief to me. It may feel that we have gone through this journey of caring for a loved one very alone but we are not alone. Others have walked the same path and we may be able to benefit by sharing.

with my love to you, Rachel, and to all here,

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 rmichaels Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2012 at 2:34am
Hi Steve,
It's been two weeks now that Mom has stopped Chemo and opted for "comfort care" aka Hospice.
We are now in the mix of weekly visits which are so helpful for me and my Dad who manages the family business.  I don't know where we would be with out this extra help.  My mom's liver pain is gone for now so she is off pain meds but her nausea has been a constant battle.  The last two days have been much better as we have dialed in a good cocktail of meds.  Having a RN and Social worker available at a moments notice is wonderful.  I'm with her on Mon & Fri's - and we have a care giver with her T, W, TH when my Dad is at work.  I really cherish my time with her each day.  The weather here in Seattle has been pretty nasty so snuggling in bed with Mom watching her "shows" had been a welcomed cozy activity.  Mom has had lots of visits from friends and co-workers that keep her up to date on what's going on at her old job.  She even helped make decisions for last weeks fund raising gala which I could she that she enjoys thinking about.  Yes, it's not all roses and yes, this is a very sad time for our family BUT the converstations we have had and the time we have spent is amazing.
We have taken professional family pictures, had more family dinners and all kinds of friends have come out of the wood work for support. Every day is truely a gift.
Best,
Rachel. 
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.
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