As we all know by now, Senator McCain and his family have made a change in their care choices. He and his family discontinued curative care in the last thirty six hours of his life.
I love my husband with all of my heart. God bless everyone who has cared for my husband along this journey. pic.twitter.com/v27sEbboii
— Cindy McCain (@cindymccain) August 24, 2018
Palliative care is not giving up. It is a recognition of patient and family wishes given likely prognosis. It is a way of supporting a patient to have the best possible quality of life in the time that they have left instead of seeking to incrementally lengthen the quantity of life.
When Senator McCain received his cancer diagnosis, a palliative care plan should have been discussed early on. Palliative care can, is and should be concurrent with curative care. The particular diagnosis that he had has extremely poor prognosis for anyone much less a man of his age. Planning and envisioning his future and his desires when he was in the mental and physical shape to have the energy to engage on those steps would and should be a good thing. It should occur whenever an individual is given a low prognosis diagnoses.
Bringing this back out to a broader perspective, we should all have our palliative care and end of life plans and discussions even before we get told that it is really important to figure out what we want. Talk through with your loved ones and your probable care givers about your values, your desires, your hard limits and your fears. Discuss what you want. And once those discussions happen, document them. AARP has a good site of state specific advanced directive documents.
Figure you what you want, and as times change, update your wishes. And make sure you document your wishes as they change.
Do this, so if you are given a low prognosis diagnosis, you can live your life as you wish instead of scrambling to figure out what it is that you want.
Tokyokie
Brain cancer is rarely the primary cancer, it’s almost always metastatic. I haven’t heard what McCain’s primary tumor was. Was it the skin cancer with which he dealt a few years back?
Anderj
I am assuming that this post was pre-scheduled given that McCain is no longer “seeking and receiving palliative and comfort care”. The larger points of course still stands:
satby
@Tokyokie: he had glioblastoma, and that arises in the brain.
daveNYC
I think there’s a bit of a tense issue with your first paragraph.
satby
I made a comment on John’s thread below that ties to this subject. The immediacy of death is so remote for most of us in this society that we just ignore until it’s almost too late that it’s going to happen to all of us. And because it seems so remote, people cling to denial about it. Taking the steps to document their wishes means acknowledging the reality, and many people prefer to pretend it won’t happen or that they can just leave it for someone else to make the difficult decisions. It’s a failure to be an adult on a personally tragic scale.
satby
@satby: and to that point, if I get diagnosed with a terminal illness at an age where John McCain was, I plan on only palliative care, not medical treatment. The treatments are debilitating too, and I’d rather spend my last months finishing up whatever’s left on the bucket list and visiting with my friends.
Tokyokie
@satby: Thanks. I probably read that and had already forgotten it already. But glioblastoma is a primary brain cancer.
different-church-lady
Well, I guess we now know how far ahead David schedules his posting times.
WereBear
Wonderfully put. I am in complete agreement.
David Anderson
@different-church-lady: Yep — this was written on Friday as I wanted to stay off the computer for the entire weekend.
evap
My spouse had some minor surgery recently and the hospital nudged him to fill out an advance directive. He did that and I did, too, I’m glad the hospital brought this up. It was really easy to do and all we needed were two non-family witnesses to sign.
grumpy realist
Also please please please MAKE A WILL. Even if you don’t think you need one and are just in the hospital for a few days. I’m still dealing with the estate of a friend who died unexpectedly last year and there were a heck of a lot of complications we had to deal with all because he didn’t have a will.
raven
@grumpy realist:
satby
@grumpy realist: I have mentioned my oldest son and daughter-in-law, but they aren’t actually married. Been together longer than my own marriage lasted (11 years), but they don’t feel the need to marry. Now they’re buying her late grandmother’s summer house and I had a discussion with them about how they need to get their paperwork in order, because they will own two houses. I think in their minds they just thought if something happened that each would take a house, but they weren’t thinking about death or complete disability, only splitting up. I tried to point out they need wills, legal power of attorney, health care power of attorney, advance directives for medical care, etc. to protect each other’s interests.
After they contemplate all that, I think the $20 or so for the marriage license may seem like a no brainer to at least limit some of the paperwork. They still need the advanced directives and wills would be good, but marriage at least gives both of them some legal protection.
Ohio Mom
@raven: We’ve had to do our will three times now: a second version after our kid was diagnosed with autism because then we needed a trust so as to not to screw up his eligibility for government benefits, and then again when we found out that the second version’s lawyer did it wrong.
Attornies are not cheap, but as grumpy realist said, everyone should have a will.
satby
@raven: yeah, my will is hugely out of date, and I should update it too. But since my entire estate is split between my kids evenly, it’s not urgent that I update the list of what’s in that estate.
At least I don’t think so
rikyrah
@satby:
You are good for pointing this out to them, satby.
rikyrah
I really haven’t even thought about a lot of this. The only thing I know is that I don’t want to be hooked up to machines. Outside of that, haven’t thought about much else.
Just had to do the will thing with my sister…maybe, she should have done it sooner, considering the scare we had last year, but it’s done and up to date.
Princess Leia
Just read a really great book on the subject! “Advice for Future Corpses: A Practical Perspective on Death and Dying.” by Sallie Tisdale. I loved how she writes about the reality of our own death- she’s a Buddhist, and it comes through in unexpected ways. Highly recommend to all here!
TomatoQueen
My late mother fought colon cancer for 14 years and finally succumbed when the disease spread to her brain. During this time, my father developed mild dementia. The denial about end of life for mom and functionality for daddy governed nearly everything they did and many poor decisions were made. There was no discussion of hospice care, just an assumption that using it at all meant the end, so no actual knowledge on anyone’s part of what services they offer, which meant that when hospice was really needed, it was a struggle to get mom to agree to their help. And of course they were marvelous and allowed her to have a peaceful end. Not long afterward, when I needed to take over responsibilities for daddy, I was surprised to see that his end of life statement clearly shows he learned from mom’s experience and does not want any extraordinary measures, thus for example I know that should the question come up, he does not want a pacemaker implanted (see the very scary FTNYT piece from a couple years ago about how a pacemaker prolongs life), nor does he want chemo, nor nothing else. We haven’t talked about it, he’s just decided all of it and I will abide by his choices. He’ll be 88 in October.
As for me–there are no siblings and no other family on this coast. There is a severely disabled young man, my son, who will always need 24-hour care. This means a constant conversation with all the people who help with him as to What To Do, and the contingencies are mind-boggling. But at least we’re talking.
satby
@rikyrah: it’s hard to contemplate the end of your own or a beloved family member’s life, but it’s so important for your peace of mind and to be sure the care you get is the care you want.
different-church-lady
I can’t even face dealing with opening the electric bill every month and you want me to contemplate my death in detail?
satby
@TomatoQueen:
It’s so frustrating and so much more common than you might imagine. I was lucky that both of my parents were very clear about their wishes. I work at the farmer’s market with an elderly lady as a neighbor and at 87 her refusal to get her own affairs in order or to face that she can’t manage her business any more is kind of heartbreaking. I’ve tried gently encouraging her to do some planning since she’s very clear about what she doesn’t want to have happen, but it would cost money for a lawyer, and she wants everything done for her for free. (That goes for yard and chauffeur services too). Her obstinacy kind of tempers the heartbreaking part, to tell the truth. But it’s a weekly reminder to me of how not to be.
O. Felix Culpa
@satby:
Yup. I never understood that kind of denial. I also know what a mess I had to deal with when my mother died, with no current will or original copies in evidence. Ms. O and I did our “estate” (such as it is) planning, complete with end-of-life directives, alongside our wedding planning. Of course preferences can change, but we have everything documented and it gives great peace of mind and is much kinder to family members who might have to take care of you when you’re debilitated and pick up after you when you’re gone.
satby
@different-church-lady: you don’t have to, as long as you’re good with a Terry Schiavo situation developing while you’re incommunicado in a hospital. Because those happen every day, it’s just that few people try to play it out in the news media as well as court.
kate p
My father went into palliative care at the Cleveland Clinic, immediately after being diagnosed with lung cancer that spread to his liver. He had a few good months during which he and my mom visited my brother in Florida and took off for a vacation for just the two of them. When he finally got sick, a few months later, he had a very rapid decline, dead within a month. He wasn’t going to spend any of the good time left weak and sick due to treatments that couldn’t cure. Years later, my mom had to go to a nursing home due to Alzheimer’s. I had all of the powers of attorney. I kept her only on medication that helped her life as it was right then, anti-depressant and anti-anxiety meds and took her off of pills for cholesterol and blood pressure. Our staunchly catholic doctor agreed with my decision, I didn’t see the point of prolonging the life unnecessarily. My children have strict instructions to do the same for me if that time comes.
Mnemosyne
The actual medical decision can be tricky. My father-in-law had a glioblastoma multiforme, but he did really, really well on Avastin for two years until suddenly, one day, it stopped working. They thrashed around for a few months to try and find something else that wpuld work as well as that did, but they never found anything. He was also relatively young (mid-60s).
However, as soon as he found out what it was, he made put his will and sat down with the family to discuss everything. (As an in-law, my job was to take my niece and her great-aunt out for dinner while the rest of the family talked.) He planned everything out right down to the funeral home where he wanted his wake … and then he lived for two more years.
Then, on the other hand, there was my older brother who died of lung cancer, and that was a total clusterfuck because he didn’t prepare a goddamned thing. He didn’t even manage to complete his divorce from the wofe he’d been estranged from for over two years. Nothing.
The Moar You Know
@David Anderson: Hey, I’m not alone! I refuse to do anything on the computer on weekends. Hope one day to never get back on the fucking things. I work with them so that will have to wait until retirement.
I hate them.
Nicole
Thanks for this post. I have a friend who is close to the end (of colon cancer, at age 47- sucks all around), and about the only thing that went his way since he was diagnosed last year is that it never spread to his brain, so he’ll be himself up until the end. He was capable of signing a DNR and agreeing to hospice on his own, but had it gone different, he might not have been able to.
My husband and I have done all of that legal paperwork, but this post inspired us to have another conversation about what we would want in specific “what if” situations, so thank you doubly.
Gin & Tonic
@Mnemosyne: My father was diagnosed with pancreatic cancer, at which time they said he had 8 weeks to live. 8 weeks to the day, he died. But he was satisfied that he’d had an opportunity to take care of everything – closing out his business partnership, finalizing his will, taking care of his retirement investments to sustain my mother for the long term, etc. It was not pleasant, but it was worthwhile.
Some years later, an uncle of mine (my mother’s cousin,) who was part of a large family but apparently had set it as his life’s goal to piss off everyone he knew or was related to, suffered a fully incapacitating stroke. Since nobody else gave a shit, I ended up having to make decisions about his care – which wasn’t for very long – and about all the post-death issues. He, of course, left no documents or instructions with anyone, and the one person who several acquaintances assumed had been his attorney had apparently been disbarred and was unreachable. What a complete fucking mess that was.
BC in Illinois
@kate p:
This is one of the benefits of the palliative care / hospice approach that should be better known. Often (not always) when someone foregoes the treatment or foregoes the next round of treatment, the result can be a little longer period of “normalcy, followed by a rapid decline.
That’s the way it was for my father and for a number of people I have known. During my earlier years as a Lutheran minister, when someone “went on hospice” it meant that it was only a matter of days. In more recent years, I would be told that someone was “on hospice,” I would go to see them, and they would greet me at the door. The next time I saw that particular person, was at the local Chinese restaurant. And when the end came, it came quickly. [Again, not always. Death can take its time.]
But by and large, the overwhelming majority of the people I dealt with said that — if things were not going to get better — just let it happen. I think that the present generations have seen enough of what “do everything” can look like, that they are more inclined to say “let’s see how far this goes, then when the time comes, let it happen. Just manage the pain, as much as possible.”
You know how, at funerals etc., the mood can shift from sorrow and regret . . . to “and I’ve got a story you may not have heard” and laughter? With a reasonable approach to end-of-life care, that can be a part of the last days also. During my father’s final week, all the brothers got together with my mother, and there was laughter in the midst of the sorrow and arrangements.
That’s what I would want as well.
different-church-lady
@David Anderson: Life
comes atgoes away from you fast.J R in WV
@different-church-lady:
This is so REAL!! Thanks Drffnt_church_Lady for being so real!
When wife was in ICU for 23 days on a vent with septic shock / pneumonia, I pondered that. I saw families with a loved one with a grim prognosis decide together to turn off those machines, after a long afternoon and evening with lots of company coming through the room across the hall. After the machinery was removed, dear aunt lasted about 3 hours, passed with closest family there.
Other family fought and fought, with a machine pretending to be their loved one breathing. They were blind and couldn’t see that their family member was long gone.
My grandma, piano player all her life, sewer, cook, typed letters and recipes for everyone. Lived to be 92, had a bowel obstruction, went into hospital in Columbus, where her assisted living center was, for surgery. Not a good outcome.
Surgeon was master of universe, was going to force her to be cured with more surgery. She was too fragile to heal from the intrusive major surgery!
Aunt Kitty, oldest child, retired teacher, got family lawyer, made appointment with management, told them that if Dr Surgeon touched her mother he would be charged in a warrant with assault. End of Dr Surgeon’s care of grandma, who passed with palliative care in a couple of days. She was all our second mother, so kind and warm! Had six grandchildren, so we were all pall bearers for her, though funeral professionals were shocked, shocked I tell you, to see granddaughter on one corner. Is a strong woman, carried the load and proud to do so, as we all were.
Wife recovered after a long hitch in hospital, still cantankerous, still with us. Sometimes the machinery allows the body to recover, always a judgment call. If I’m old and frail, let me go, if I’m still strong, let me fight for a little while.
Grandchildren were more basic in approach … would have physically kept his ass out of that room!! Glad Aunt had wisdom to bring lawyer first thing!!!
JeanneT
@BC in Illinois: My husband went on hospice after his third try of chemo (for recurring prostate cancer) failed. He had two months that were pretty good, with enough meds to control the pain, then the last month lost energy and strength and needed much more aggressive pain relief as his body shut down. We did tell lots of stories to each other and family in that last week, and even on his last night he was joking when our son peeked in to check on him in the middle of the night, saying “I’m not dead yet!” a la Monty Python…..
As a caregiver with a hermit’s personality, I found hospice to be intrusive, inflexible and irritating, but it was great that he had several months where he wasn’t constantly coping with the side effects of chemo. I am sorry we didn’t choose hospice for him after the second round of chemo failed; he could have had six good months instead of just two.
J R in WV
@BC in Illinois:
Wise advice. My dad and I watched football on his all everything cable plan, with the sound off, holding hands. It was very comforting. Then one day he wasn’t really awake much… the next day he was gone. After years of leukemia treatments, COPD care, etc, the end was much simpler, just morphine for the pain, then checked out.
Hard to believe it was 14 years ago now. Election day, 2004, what a shitty day. Smirking Chimp reelected, and we all thought that was the worst president we would ever see! Wrong!
Gravenstone
Personal experience can be very enlightening when it comes to willingness to arrange EoL issues. My grandfather battled massively metastasized lung cancer in the early 80s. The treatment of which lead to multiple questionable decisions that only prolonged his agony. Even though we were only teens, that left an indelible impression on my sister and myself.
Flash forward 15 years or so, and it was my sister’s turn to make contingencies in hospital when faced with brain surgery. Sadly, those contingencies had to be implemented when she succumbed to post operative complications. That was enough to push my parents to write out living trusts and medical directives. Which again had to be called on just a few years later.
For those without such unfortunate personal experiences, consider those of others. It’s uncomfortable to consider these things in the here and now, but it’s harrowing to deal with them under the pressure of an ongoing health crisis. And there’s always the (hopefully remote) potential that those making decisions for you might not always have your best interest at heart.
J R in WV
@JeanneT:
I think hospice varys a lot depending upon the management of each specific group. My dad’s family practice dr quit on him… we were shocked to be essentially thrown out, with a phone number for another doctor.
New doctor was Pakistani, closed his office early on Fridays, also managed a local hospice. Told us gently (not that we didn’t know all this) you (father) have multiple fatal diseases that we cannot cure. But we can treat your symptoms and keep you comfortable.
Was a very compassionate person, his hospice workers were angels of mercy. As was he. Many hugs with Dad’s RN…
Sorry your hospice experience was not as smooth and compassionate as ours was.
Steve
I’m sorry, I know this is snarky and the comments here are very thoughtful. Let me just say I’ve had more than my fair share of loss: 10 immediate family members plus one best friend in the span of 12 years. I know a lot about EOL care and palliative care.
However, I can’t help point out the fact this story and Palin’s “death panels” are a bit eerie.
Brachiator
@David Anderson:
You have to be careful when considering a person’s age. Specifics and family history are heavily at play. McCain’s mother is 106 and still going strong. Her twin sister lived into her 90s.
I have to find it again, but an interview with a number of specialists in this area mentioned having a general directive, but not trying to be overly specific about wishes. Aspects of care and treatment, new medicines, etc may have been developed in the meantime, but no one would really have time to research all this.
EthylEster
When I read on Friday the WaPo headline with this news plus the frequent and annoying “and what does it mean” appendage, I said to myself “It means McCain will die in the next 36 hours”. And I was right. Very similar to Barbara Bush. People wait too long IMO.
Brachiator
@satby:
I advise people to really re-think this when assets, or children, or involved.
JeanneT
@J R in WV: Oh, please don’t read that the hospice staff were not compassionate – they certainly were. It’s a difficult profession, being a hospice nurse, and I admired them greatly. But we are/were independent cusses, and because of the structure of hospice, they couldn’t meet our needs for control, privacy and flexibility.
satby
@Brachiator: I am pretty sure if children were a consideration they would marry before having them. And when I pointed out who would be their heirs or make the decisions if anything happened, they realized they need to get that handled because both sides have some problematic relatives.
I’m pretty sure I’m not one of the problematic ones, but you never know ?
Barbara
@satby: People often do not realize how different the law treats married persons when it comes to the ownership of real property. When spouses buy a house together, they each own it as a whole — when one of them dies, the other assumes sole ownership without having to do anything. You can emulate this arrangement in most states without being married but you have to specifically designate the mode of ownership, because the default in most states is to own property as tenants in common, which means the half you don’t own goes to the heirs of the other person. If that’s you by bequest, super duper, but if it’s not you (because person did not have a will or left it to your offspring or her parents or siblings) you are either going to have to buy them out or sell. My brother lost a house he mostly financed because it was in his girlfriend’s name and when they broke up there was nothing he could do about it that would have made financial sense (house wasn’t worth enough — any money you spent trying to get it back would have been better spent buying a new one).
Ruckus
@satby:
My sister died of breast cancer that had metastasized. She went through 2 major chemo sessions over 5-6 yrs and then they opened her up and saw what was going on, she was told they could give her massive doses of chemo and keep her alive for 90-120 days or put her in hospice and make her comfortable. She chose hospice. The number of family and friends that said she should fight and if not she should be committed so that she couldn’t make this decision just amazed me. We were in the lobby of the hospital and I gave them all shit. Asked them how many times had they gone through chemo, how many of them had cancer, how many of them would feel if someone took away their decision as a fully grown adult to make their own life and death decision. The were stunned that I would back her decision. I told them it was her decision, it’s her life, no one else’s. Not mine, and not theirs. Her doctors won’t and can’t make this decision, and she’s not making this in a drug induced stupor, she knows exactly what the outcome is going to be either way, and which way will be far worse for her. She’s made her choice and it is only her’s to make. Her son and I walked across the street and had a drink to toast her life.
Ruckus
@different-church-lady:
One is much harder to do, the other one comes along every month. The one that’s hardest to do is far more important and may actually give you a bit of peace in your life, because you know at least that some things are taken care of. And they are things that you will be unable to do then.
Ruckus
@BC in Illinois:
My sister died on mom’s 90th birthday.
She had that birthday party in her hospice room, with family and friends. She got to laugh and see most everyone. It was an appropriate farewell for her.
PhoenixRising
@satby:
Hey, that was our most compelling case for marriage equality: It’s $3500 a year plus carrying an accordion file of paperwork to almost be sure what happens when one of us dies…and that’s ridiculous!
PhoenixRising
@different-church-lady: You don’t have to contemplate your own death! Just recognize that someone will have to and figure out how to make amends to that person in advance. If you’re not in a position to make anyone an independently wealthy heir/ess in exchange for doing this task of adulthood for you…well…find a support group. ‘Figure out everything when I can’t anymore’ is a hell of a sentence for someone you care about to serve.
Ohio Mom
@Steve: Well, there is a connection. The “death panels” Palin was so against was actually a proposed part of the ACA that would allow doctors to be paid for the extra time it would take to discuss end of life issues and options.
It’s not a short discussion and doctors generally don’t have that much time to spend with each patient. Extra funding for their time would be a great encouragement for them to help their patients plan.
This thread touches on a lot of the issues, questions and concerns such a doctor-patient discussion might address. This thread also has asubtext that recognizes that facing these questions head on is a worthwhile effort, and that death is inevitable. So why not try to plan for as good a death as possible?
Very broadly speaking, educated, middle-class Americans tend to be like the commentators here, pragmatic and willing to look at the options.
Less educated, lower-income and working class Americans — that is, people who might be more likely to support Palin— can often harbor a deep distrust of doctors and the medical establishment. They also tend to want every treatment possible; the idea of “giving up” in the face of death is anathema.
Now of course there are exceptions to these broad categories on an individual level but you can see why Palin’s shrieking about “death panels” might resonate with some voters and disgust others. And why this discussion here might remind someone of “death panels.”
Anyway, that is quite the tally of loss for you, my condolences.