End-of-Life Conversations: Patients & Caregivers

[Lee and Chi]

I'm in nursing and one topic I read about all the time is how nobody (meaning doctors, nurses, patients, caregivers) want to talk about death or dying. It's just one of those things programmed into our health care system. The goal is do to whatever it takes to "fix" the patient and I see so many examples where death is never discussed with the patient or the families.

It's an uncomfortable subject and it's difficult to bring up. I used to avoid it like everybody else. Nobody brought it up to my Mother and our family until Hospice gave us a pamphlet. I thought it was a little late at that point, but I had been slowly bringing it up and talking about it with most everybody by that point.

That being said, I know deep down that one day, losing my Mom is going to allow me to bring it up with my patients and talk about it in an open and honest way. I'm going into geriatric psych, and I'm going to need to have this conversation a lot. I like to think of my new perspective on discussing death and dying as one more gift that my mother gave to me to make me a better person.

[CaroleHammett]

Several members of my hospice team have told me that too often patients aren't referred to hospice until it's too late to counsel them and their families about end of life issues.

Sometimes the late referrals are the fault of the patients' doctors, but other times it's the patient and the family members themselves, due to the fact that they hear the "hospice" word and immediately perceive it to be a "death sentence" for their loved one rather than a way to ease the transition for the whole family.

It takes time to process the realities of our situation and it seems to me that waiting until the last minute can only make it more difficult. I was very fortunate because I was referred to palliative care (chronic illness or less than one year to live) in May 07 and since then have had numerous conversations with my palliative care/hospice teams about end of life issues (not just about end of life conversations, but also durable powers of attorneys, willing one's body to science, completing the Five Wishes form, ethical wills, etc.).

These conversations have made it easier for me to accept my own condition, and in turn that has made it easier for me to have conversations with my family members. The team will also converse with family members about end of life issues, but in either case, the conversations can take place only if the patient and/or family members are willing, whereas too often everyone is in denial.

Carole

Although we walk in the rain, my heart feels sunny inside.--Neil Young

[fillise]

There is an excellent discussion of hospice on Leroy Severs blog "My Cancer" on the NPR website (to get there I Google "Cancer NPR" and it is the first entry that pops up).

Leroy was profiled in the Ted Koppel/Discovery Channcer series on Living with Cancer last year. He has maintained a blog about living with cancer for two years. Recently he learned that his cancer has spread siginficantly and there are very few treatment options left. Yesterday's post was about whether it was time to call hospice. The most illuminating part were all the comments. It was almost universal that people wished they had called hospice in sooner and given their loved ones more quality days. There seemed to be the sense that hospice is too often thought of as giving up and thus only called when there is little they can do to make patients comfortable. There were a few negative experiences with hospice, but most were grateful for hospice and almost universally wished they had been involved sooner. It's worth reading.

Susan

[Welthy]

Another take on this issue. We never discussed end of life issues -- at least not toward the end. All wills, trusts, healthcare power of attorneys, etc. had been done long before my husband's diagnosis. Upon diagnosis, he mentioned a few things he wanted our kids to have of his, but that was it. We were lucky to have a doctor who realistically told us that Tony was treatable, but not curable at stage IV. That was all we ever needed -- no delusions, just a big fight for his life. He fought til the end and I promised him that we wouldn't bring a third party (hospice) in unless it got completely beyond anything I could handle. It never did. He also was being actively treated and some hospice groups won't come into that situation. I did have a talk with the oncology staff a few days before he passed about getting morphine in case the breathing got too bad. Things spiraled down so fast that this never happened and I did have to bring him to the hospital to get the morphine and a lot more oxygen than could ever have been provided at home. He was never in pain and was ambulatory until hours before he passed. At the hospital, a palliative care team did come to help make arrangements for when he went home. He didn't make it home.

He did not like hospice because when his brother was ill, one of the first things they did was to tell his family to go and plan the funeral. That didn't set well with him at all and I agreed. He was shocked that someone would encourage a patient's family to plan a funeral before they had died and found it quite offensive. He was big on "where there is life, there is hope." Plenty of time for the family to make arrangements after they are gone and their standard spiel really angered him. He couldn't believe that our SIL and nephew actually followed the recommendations like sheep, instead of spending THAT time with their "live" family member. He said it was like burying someone before they were even dead.

I always have said that it was his life, his cancer, and ultimately, his death and he could do it any darn way he pleased. I figure that humankind has gone through thousands of years taking care of their dying loved ones without the help of hospice, so what was the big deal about getting them involved? I didn't expect some of the things that did happen at the end, despite endless hours of research, but neither did countless millions that have gone before.

I understand that for some, end of life discussions bring a certain level of closure and comfort to all parties, but that was not how my husband wished to handle his death. I was good with that and don't regret for a moment that I followed my husband's lead to the last moment of his life. It was all about him and his wishes. We were lucky to be able to "do it his way."

[CaroleHammett]

Susan: Thanks for the link to Leroy Sievers NPR cancer blog. I just finished reading the hospice comments, which I found not only positive, but informational.

Welthy: I, too, had already taken care of my wills, trusts, durable power of attorney, etc. long before my diagnosis. The main changes I subsequently made to those were (a) since I could no longer be a transplant donor (other than corneas) I willed my body to science (Science Care Foundation); and ( instead of the single durable power of attorney, I completed the lengthier Five Wishes form. The information about these I got from my palliative care team (upon my request--not pushed on me).

I can understand your husband having formed a dislike of hospice based on the experiences of his brother and his family, but I would also like to think that those hospice actions ("plan the funeral") are a rarity; i.e., my own team has answered my every question, and likewise those of my family members, but never have they "pushed" any of us to take any actions.

But despite his understandable attitude toward hospice care, you also wrote that had your husband lived longer, he would have experienced palliative care (which I've been on since 05/07), and that is no different than hospice care other than one is allowed to continue to undergo chemo, etc.

I do agree with what you wrote about it ultimately being your husband's decision (just as it is ultimately mine), but I disagree with your premise that "...humankind has gone through thousands of years taking care of their dying loved ones without the help of hospice, so what was the big deal about getting them involved..." In the past, most of humankind did not die of a lingering, chronic illness, but fairly quickly. In my opinion, it's "modern medical advances" that have created a need for hospice or palliative care.

As to end of life discussions, you noted that you had to follow your husband's lead, which is no different than my case; i.e., my family will have to follow mine. Each of us has our own unique way of handling things and that is how it should be. Each of us also hopes that our family will accept our way, which--unfortunately-is not always the way it is.

Your husband was very lucky to have you at his side, supporting him in every way. I fully expect to have the same even though my way is not his way. In both our cases, these realized expectations will be because of the generous, unconditional love of those we leave behind--which is why I consider myself a very lucky woman, and your husband a very lucky man.

Carole

What lies behind us and what lies before us are tiny matters compared to what lies within us.--Ralph Waldo Emerson

[peebygeeby]

Hi everybody,

I'm back. Doing good sometimes, not so good other times, but I'm keeping busy which helps alot, and I know it's just going to take time.

Hank never made it home to hospice care. I was trying to arrange it the morning he died. I know he wanted to come home to die, but we never really realized where we were in this battle until it was to late. It is my only regret in this entire ordeal. I wish he had made it home. I don't blame myself. I did'nt know. But it's really bothering me.

I spoke to him on the phone the night before he died. We said our usual I love yous.

I think throughout our lives we never know when our last goodbyes or I love yous will be. I can be any day, any time. We just don't know. So, Hank and I never had the end of life talks. But, throughout our time together we both knew what our feelings about each other were. I knew he loved me, he knew I loved him. It did not have to be said on a death bed.

When we had the funeral service for Hank his sister asked me if I would go view his remains with her. I told her no. I had already said goodbye. I need to remember him alive and healthy.

Take care guys,

Gail

[teriw]

Carole,

I commented on this thread a few days ago. I've just read it through again fully. I just want to tell you that you are a truly amazing woman. Truly. Thank you for the frank and terribly important topic, and for sharing so much of yourself. Keep talking, keep being frank, and express everything and anything you want or need to express to all who need to hear it.

[CaroleHammett]

Teri et al:

Several of you have thanked me for starting this thread for your own sakes, but I want you all to know how very important and supportive your own imput has been to me.

Your frank and open discussions have offered me immense insight and for that alone I love you all more dearly than you will every know.

Carole

Although we walk in the rain, my heart feels sunny inside.--Neil Young