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