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Old Dogs and New Tricks
We kids were born to old parents: a mother in her forties, a father in his sixties. Our father had already lived a full life — full in all senses, including tragedy — before we were born. Despite his relative age, Dad long remained healthier than the rest of us. Sure, he worried plenty about dying of a heart attack or cancer. He threatened to have an ulcer whenever something upset him. And he took several drugs to lower cholesterol and blood pressure. But, aside from a yearly bout of man flu, his health remained almost miraculously untroubled, especially compared to the rest of his family’s.
Nonetheless, Dad feared death. I never knew another person who feared death the way Dad did. Perhaps it was because of the tragedies in his past. He worried about life-threatening illness constantly. Yet he could not bear to hear about death. He could not bear to hear family members acknowledge their own (or his) mortality. He especially could not bear to hear anyone he cared about mention that — in some circumstances — it might be better to die than live.
Then a strange things happened. Dad’s kidneys began to fail. Perhaps it was because of the combination of cardiovascular drugs he took, nicknamed “the triple whammy” by kidney doctors. Perhaps it was for some other reason. Though he had been a hard-drinking, salt-loving man all his life, he meekly obeyed the low-sodium, low-alcohol diet he was put on. No salt. No salt substitute. One glass of white wine allowed per day. This clearly was the behavior of a man who did not want to die.
The diet, though, was not enough. Not even with drugs, whether swallowed or injected. Gradually, Dad lost his appetite for the wine. He was gradually losing his appetite for the rest of life, too. It became clear that no intervention short of dialysis could save him.
Imagine our surprise when Dad — the man who could not bear to think of death — refused dialysis.
None of us had expected him to make this decision, even in his diminished state. We did our duty in trying to talk him out of his refusal, but we also couldn’t help being somewhat relieved by his decision.
Dad was already suffering more than he had probably ever imagined was possible, and dialysis, while it promised to keep him alive indefinitely, held out no hope of restoring him to his old self. His frailty and dementia were too far advanced to expect much improvement. In many ways, the Dad we knew was already dead. Perhaps he refused dialysis because he, too, sensed the same loss.
Moreover, in refusing dialysis, it seemed to us that Dad had finally beaten the cowardice surrounding death that had dogged him, if not for his whole life, then for all the many years we had known him. In his weakness, he appeared to be finally manning-up, accepting his full humanity, including its mortality. This, too, was a relief to us.
Despite his clearly stated refusal of life-saving treatment, we had to fight the system to get him into hospice care. We especially had to fight to get him hospiced at home, where he could be comfortable, instead of in some strange, disorienting institution, where he would most likely remain miserable for as long as his awareness lasted. As Dad had grown frailer and fallen more often, we had learned that he really, really hated hospitals and nursing facilities. At first, he tried to sneak out of them, though he was usually in no condition to make a successful escape. When he stopped even trying to escape, we knew his old fight was gone.
Well, we won that fight, and Dad died a natural death at home. He couldn’t talk much by the time the home-hospice arrangements were finalized, but when, at last, we could honestly tell him he’d never have to be dragged from his home to the hospital again, he smiled. Broadly; more broadly than I had ever seen him smile when his health was good. In home hospice, Dad was neither refused food nor drink whenever he wanted them. We’d cajole him into eating and drinking – and into getting up once a day for as long as he could – but his refusal had ultimate say. And why shouldn’t it? He was the one facing death, not us.
Hospice is both praised and maligned by conservatives – praised as pro-life when it’s an alternative to assisted suicide, maligned as anti-life in other cases. And indeed, some hospice workers do seem to see their role as hastening their patients’ demise rather than keeping them comfortable while nature takes its course (one nurse assigned to help us with Dad really did seem over-eager for him to die; we got rid of her). But overall, hospice strikes me as a natural, reasonably humane way to die. Certainly more humane and natural than forced survival as non-sentient meat stuffed with tubes and wires in some lonely hospital bed.
But what do you think? What have your experiences with hospice been? Good or bad?
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I have only had one experience and it was overwhelmingly positive. My dad died five years ago from lung cancer and in the last couple of weeks they were invaluable. They were a huge blessing to my siblings and mother.
I got to know several of the providers and there was something I noticed; in three of four cases, they were from large (6+ kids) families. The last nurse who was with us the night he died was from a family of 13.
On a side note, my best friend’s father died several months ago. This was a man who also married and started his family late (post 40) after nearly becoming a priest. He took his religion and health very seriously, to the point I think he thought death could be cheated, and he fought it ’til his dying breath at 92. I think the last thing he did was take a vitamin, and he insisted on health food to the end.
While with his own life his idiosyncrasies could be excused; the way he treated his wife was infuriating. She suffered a stroke in her last year and was bed ridden with his daughter providing care. He constantly harangued her to get out of bed and was stuffing health supplements into her until she died of a heart attack.
I found the seriousness with which he treated his religion and his denial of the inevitability of death to be a weird juxtaposition.
I was supposed to get hospice care for my mother, at her home, but I was alone with her for 2-1/2 days, after bringing her home from the hospital. They showed up just at the moment of her death. I let them take care of the details, and talk to a hysterical daughter. I was numb and could barely function. Other folks I know have had good experiences with hospice.
A brave and heart-wrenching story, Midge…We came to the end of a similar journey at the end of July with one of my parents. Hospice – because of the over-eagerness paradigm so lauded now in our area of rural PA (not its original self-understanding; remember Art Buchwald’s longevity) – was never even considered. My family of origin has a plethora of nurses, as does my extended family. Family care at home was hardest on one of my siblings in particular, but she willingly undertook the lion’s share, and is beginning to turn the corner. We all consider ourselves blessed in the long view.
Thank you for sharing your story about your dad. It’s frankly reassuring.
My own father was in a form of hospice care at the hospital. The nurses connived to keep him around, as they were full-timers while the oncologists were a collection from a bunch of elsewheres. Near as I can tell anyway.
So he had prostate cancer which was all through his bones and guts by then, and went the oxygen route, where beyond a certain point, institutional pneumonia does the job, and the oxygen is a comfort aid which becomes the life sustainment itself. but the lungs will never regain function, so it’s really a one-way trip, nearly free of ethical dilemmas.
The nurses knew the timeline. We all agreed to turn off the oxygen around midnight, and right on schedule, he had a moment of lucidity around 6AM, spoke with us a bit, then got agitated, and slipped away.
It wasn’t home hospice, but it was just palliative care for the last bit, and the care he received was awesome. Heroic measures to save his life at that point would have been inappropriate, and allowing the family to determine (within parameters) how the last bit should play out was immensely helpful in being able to deal with things.
And shame on you for giggling at the scourge of Man Flu. You can never know. Just — just — no.
Three weeks ago I flew back to PA to say goodbye to my mother at the hospice facility. She had just turned 99 a month earlier, and wanted to leave this earth. She was just plain tired. A week before my visit she was very normal and her old funny self, living with my younger sister and her husband. Mom went to bed fine, and late that night she collapsed with double pneumonia and congestive heart failure. Mom was transferred from the hospital to a Lutheran hospice facility less than 48 hours later. I arrived three days after her transfer, but she was no longer conscious. After two days of visiting her in the hospice, where she never recognized my presence, I said my goodbyes left for home.
She died peacefully three days later. My sister, who had cared for mom for the last 25 years, had only praise for the hospice staff, and I found them all to be warm and friendly. During my short time there we were visited by three different chaplains, one Catholic and two Protestant. Mom was a fallen away Protestant, but all three chaplains spent considerable time with us, and showed the grace of God towards her.
I would say that our experience was entirely positive.
Midge,
What a beautiful and emotional story. Thank you for sharing it. While I’m sure that time was difficult for you and your family, it sounds like your Dad departed on good terms with the world.
I’ve never had direct connection with hospice, and I’ve heard only good things from the immediate family of two aunts.
The hospice nurses relieved the family of some of the burden of care, managed medicine and pain, and permitted my uncles and cousins to manage the emotional last weeks and days of their loved one dying from cancer and to prepare for a future without them.
Death is part of our lives, and it seems right to include a qualified caretaker to be a support to an entire family looking death in the eye.
We don’t know the hour our circumstances of our departure from this earth, every moment we are here is an opportunity to give or receive grace. It saddens me to think that a hospice caretaker would be so presumptuous as to influence the pace of someones departure beyond necessary comfort and care.
That’s a really lovely story, Midge. So wonderful that you were able to give your father the peace and comfort that he needed at the end.
I sometimes think that it would be nice to have the “freedom” to die. Not that I want to really. Nor, of course, do I actually have the ability to eliminate the possibility that I might be struck down pretty much at any time. But dying right now would be really tragic, since it would leave my young children motherless. I think if it weren’t for that, I wouldn’t fear death so very much, but it does have a kind of horror for me for that reason.
I don’t really know if that has anything to do with your father’s situation, but it’s possible that he was able to let go of his fear because his family had reached the point where they could live without him. If that makes sense.
Thanks :-)
Possible. But I suspect much less likely than in your case, just knowing who Dad was. One of his great frustrations in his last years – at least before imminent death set in – was his suspicion that his family didn’t need him so much any more. That maybe he needed us more than we needed him, if that makes sense.
Possibly, during his time in hospice, he accepted that it was OK for him to depend on us for a change. At least, I like to think (or perhaps more accurately, hope) he did.
I have to take a breath when asked to go back and reflect on those sad days when hospice helped us ease our father out of this existence. It’s been 23 years.
He died peacefully in my sister’s home. We were gathered around him. I’m still astounded at the pain of his loss. But the hospice help made all the difference.
It is a beautiful story. Thank you Midge.
Tears Midge. My Mom made the decision to discontinue heroic measures to fight her kidney disease. My brothers and I understood the decision. She was 89 and wanted to pass away at home. Hospice made that possible. I cared for my dad starting last December and tried to do the same thing for him. He suffered from Alzheimer’s and I was able to care for him in his own home until the last 10 days of his life. I made the call to hospice. He was moved to the hospice care facility and I held his hand as he took his last breath. My brothers and I kept our promise to look after dad after mom passed away. Hospice care made that possible.
My dad, who ignored increasing PSA levels until prostate cancer put him into kidney failure, was in at-home hospice care for the last month of his life in 2013. He had fought it for many months before his doctor bluntly told him that he was dying. after which he consented and enrolled.
I think the hospice care folks helped my mom, his primary caregiver, the most. My dad refused pain pills, fearing addiction (although he self-medicated with whiskey and vermouth, how much so we only found out after he’d passed and we found the hidden bottles), but the hospice nurses were able to get him needed medical equipment and other medications, all delivered to his house. He’d never had much use for doctors or hospitals, so passing at home was the only option for him.
Great read Midge. I don’t like dealing with my mortality either, though perhaps not quite at the level of your dad. I like to think I might live long enough to see some serious life-extension, but I have to deal with the likelihood that I was probably born a little too early.
I have had mixed experences. My mother-in-law was in a small hospice run by a pair of maried (to each other) nurses. It was a small operation run out of what had been a private residence. In this environment, she blossomed. She became social again, making friends and being so pleasant that they were always telling us what a delight she was to have around. This was a surprise, as she had been very defensive and introverted for many, many years.
My mother was in a larger establishment, an assisted living / nursing home complex. The nurses/attendants there fit my impression of bureaucratic functionaries. To get attention for her, I had to intervene. They seemed to treat their residents like inventory. She was in considerable pain toward the end, until the day before she died when she suddenly seemed much improved.
So my answer is: it depends. In each case, it was the best we could find (different states). In the end, both died quietly in their sleep.
The people involved make all the difference.
Thanks for your story, Ms. Midget Faded Rattlesnake.
As an elder in the church I have seen hospice care from three different hospice provider services, including one that worked in my own family.
I have found that one of the agencies has a difficult personality as a bureaucrat, but the staff of all these agencies have been generally professional and compassionate. Home hospice care is better if it is possible, but it is not always possible.
When facing such an end, I have seen some families postpone hospice care, and then discover that they should have started hospice sooner. Hospice can really save the family caregivers from ruining their own health. I have seen hospice nurses model great conversations with young children who came to call.
So, at least in our area, we have found the hospice programs to be a very good way for families to help see their loved ones to the end.
In the church, we face a hope-full end to this life. Hospice has helped manage the healthcare issues so families could uplift their dear ones in their final days.
Midge,
Thanks for being who you are and sharing. You have a way of expressing hard things with your own distinctive seriousness with a smile.
I will always remember a Japanese lady saying “I want to go to heaven.” when she was going through terrible pain. It seems like the better thing to say at the end of life.
Thanks for sharing this, Midge.
Yes, it is a weird juxtaposition.
Regarding how he treated his wife, infuriating as it was, I can sort of see how it might happen.
In our own family, striking the right balance between encouraging Dad to eat and helping him to get up, while not plaguing him with unwanted “help” that would just harass him, wasn’t always easy. For a long time, Dad had this trick of refusing food until he actually tasted it, at which point he’d want more. At some point, though, he really didn’t want to eat anymore, and accepting that he was no longer just being coy about food could have been difficult.
Thanks for sharing this. Can’t speak too closely to your experiences myself, can only observe that hospice was a great assist to my own grandparents at their passings – it took the burdens off of my parents and their siblings during the last weeks.
Actually, I’m somewhat sympathetic. When you’re not used to feeling funny, feeling funny can come as a real shock.
Women in their fertile years, whether pregnant or not, have perfectly “healthy” reasons to feel funny on a regular basis (whether once a month or for nine months at a time). When they get a cold (or the flu, or anything other common malady, really), the shock of the altered sensation probably just isn’t as great as it is for an otherwise healthy man.
Thanks Midge.
Sartre said that death is always a surprise. It looks, though, that hospice eased your shock a bit. I know it did for my mom when pop died.
Anyway, a lovely post and thanks again.
Every death follows its own path and decisions have to be made on a case-by-case basis, but Hospice was great for our family when my Dad died. He decided he was ready to die and took himself off all medications except palliative ones. His mind went pretty fast, though, and my capable Mom became exhausted with caring for him. We all realized that someone was going to have to be there with Mom so that he could have 24 hour care and her health wouldn’t suffer, so we started taking turns flying home to stay with them in two week blocks. My shift came first and it was difficult. Death was in the house and was so sad and oppressive. I was glad to be there, but the weight of impending death was so wearing on both my Mom and me. To those who champion death with dignity, I am here to say that death is not dignified. Nor should it be. I think it’s actually good for all of us to contemplate our own decay and deterioration. When death approaches, the mind, bodily functions, social skills, all deteriorate. Dust to dust.
In this atmosphere, the Hospice nurse, who came every few days, was a breath of life. Somehow when she came around, joking with my Dad and doing some of the tasks it was hard for us to do, death seemed more natural, like a part of life, but not the only part of life as it seems to be when you are caring for a dying person that you love. Someone understood and was there to help us through it all, not only with equipment and oxygen and all the things that eased the physical job of caring for Dad, but by being cheerful and upbeat while still understanding the process of death and its place in life. She told us what to expect and just made everything more normal. As turned out, Dad died while I was there. Hard as it was, I’m grateful I could help see him through his last journey.
Amen to what Rachel said. When I am with that wonderful little family, I am always struck to the core at how much those little boys’ happy lives revolve around those two good parents that they have, and how hard it would be for them to lose either their Mom or their Dad. I’m so grateful they all have each other.
Two of us lived within a half hour’s drive (if traffic was good) from Mom and Dad’s. Instead of taking turns, we had a pecking order. Mom was the primary caregiver. I was on-call 24/7 as the secondary caregiver (and spent many nights at Mom and Dad’s), and my sister and my husband were tertiary. Other relatives lived within driving distance (in the sense that driving was still faster than flying), and they dropped in occasionally.
Strangers in the house, especially strangers who were coming for him, alarmed Dad. A lot of what home hospice provided us was hands-on training or talk-throughs on the phone so that we could do the tasks a nurse would usually do without upsetting Dad, plus appropriate equipment to make the jobs as simple for a layperson as possible.
Following is a comment I made just yesterday at Econ Talk in a response to a discussion with hospice physician Becky Liddicoat Yamarik:
My almost 97-year-old mother died three months ago of pancreatic cancer, diagnosed in late January. After her second stent (preceded by an ER visit) at the end of May, she entered hospice. The difference between the oncological portion and the hospice portion of her illness could not be more stark. Whereas the oncologist was very kind but rigidly formal and avoided any talk about the amount of time she had left, the hospice nurses were almost overly familiar and chatty, exhibiting a kind of new age, loosey goosey bedside manner. They were, to a person (she had four different nurses in a ten-week period), spiritually oriented if not churchy. Mother, who never truly acknowledged she was dying, liked hospice because they would bring her whatever she needed in the way of home aids and everything was free, even meds. I thought of that aspect of it as a kind of gift from the system for being willing to die. I never saw a hospice doctor, except for one who came with one of the visiting nurses, but I think that’s because we never called on hospice outside of those weekly visits: except for a couple of really scary late nights, mother pretty much walked through it, never asking for pain meds stronger than Ibuprofin until two days before the end, when she finally asked for morphine. I think it scared her, breaking out the morphine, and it’s true that after that, the end was swift. (I don’t think it’s the case, but I can see why people think the morphine kills the patient.) Those last days were bizarrely amazing, and though I think I was somewhat traumatized by waking up and finding that she had passed during the night in the bed next to mine, I am very glad that her death was something we shared at home rather than in a medical facility. I think, though, that it will be a long time before the acceptance of death is widespread enough that hospice becomes much more the norm, but for people like me, all things considered, knowing that help is just a phone call away, hospice makes terminal illness seem as much a part of life as of death.
Odd coincidence – I was just listening to Russ’ podcast with Dr. Liddicoat Yamarik when I read your comment. This is a highly recommended listen for those who are interested in palliative care and the issues around it: http://www.econtalk.org/archives/2014/11/becky_liddicoat.html
Thanks for linking to the podcast, George, and I totally agree with your assessment.
I lost my father five years ago and my mother three years ago.
Dad had serious heart disease that meant he could go any minute. He lived with it for several years. As it became clear that the end was fast approaching, we got hospice involved. They did a marvelous job helping dad with a variety of symptoms (swelling legs, pain, dizziness), but were even better in helping my mom, who was herself slipping into dementia. The hospice nurse was wonderful. My father was completely unafraid of death (I’ve never known anyone so calm about it as he was), but hospice helped. The greater beneficiary was mom.
Two years later, mom had slipped so deeply into dementia that she needed full-time care. When a variety of physical problems made it clear that she was within months of death, we got hospice involved again. The nurse worked directly with the health people at the Alzheimer’s facility to make sure the drugs remained consistent, and that her overall care was properly administered. Most of all, the nurse became a constant presence in mom’s life. Near the end, the two people she still knew were me (her only surviving child) and the hospice nurse (mom spoke lovingly as “that cute little girl”). On the night mom died, the hospice nurse was there with us, helping make arrangements. She called me regularly for a few months until I told her we were going to be fine.
Bottom line: (1) properly done, hospice is a wonderful thing, for the dying and their families and (2) the right nurse makes all the difference: in both of my cases, they were wonderful.
Hospice was a great experience when my brother died of cancer. They were a great support to my sister-in-law. Once again, the nurse was superb.
My first encounter with hospice was almost 18 years ago when my dad died from metastatic colon cancer. He was at an inpatient facility for about a week before he died. He refused to have in-home hospice because he said my mother would spend the rest of her life pointing to wherever the bed was and say “that’s where Gene died.” He was, of course, right. Hospice was a gift to our family. The support, education about the dying process, and for us the understanding that different people grieve different ways and that ok.
Professionally, I have sat by the bedside in hospitals and NICUs when patients slipped away–I have sat with patients and families as they made the difficult decisions to stop treatment. I’ve been yelled at by family members for being “a one-person death squad” when a patient wanted to stop treatment and the family didn’t, and I’ve written orders to rescind sedative palliative treatment when the patient’s decision seemed driven by depression.
I understand the horror stories, and I am horrified by the movement towards assisted suicide and decision-making with out the family or patient (e.g., NHS Liverpool Care Pathway). However, I’ve also had the privilege of meeting amazing people who are not driven by cutting healthcare costs or depriving people of treatment, but rather want to foster a care environment where people can decide what they want when it comes to their care.
Not surprisingly, many of the hurdles to implementing good palliative and hospice care come courtesy of government regulations.
For the grandparent of ours who received institutional hospice care, institutional hospice was unquestionably the most comfortable choice.
If my family is anything to go by, some elders can make peace with receiving care that takes them away from their dwelling and others cannot. My father could not. Another relative of mine (who had avoided doctors for most of her life – and who had only grown increasingly suspicious of the practice of medicine as the paperwork involved multiplied) tried moving into assisted living for a while and hated it so much that she moved right back into her house and refused to budge until the morticians came to cart her away.