Old Dogs and New Tricks

 

shutterstock_159402392We 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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  1. Kay of MT Inactive
    Kay of MT
    @KayofMT

    Midget Faded Rattlesnake: “refused to budge until the morticians came to cart her away.”

    That will probably be me.  Actually, I plan on having my grandson nail a few pine boards together, wrap me in a sheet, and bury the box in the John Marshall Wilderness. A hundred years from now or later, someone will find my bones and wonder how they happen to be buried there. Nothing like continuing to be a problem long after you are gone.

    • #31
  2. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    PsychLynne:

    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.

    Even within our family, there was some tension about how much to pressure Dad to keep going. Really not much tension, especially compared to what I’ve heard has happened in other families. But enough tension that I sometimes wondered whether my tendency to accept Dad’s wishes to refuse care was viewed with misgivings by other family members. We worked through these tensions with remarkably little drama, though, and hopefully no family member disproportionally got their way except for Dad.

    I do wonder, though, how you can tell the difference between misery driven by physical pain and impending death and simple depression. Not that it would necessarily be easy for you to explain to a layman. But I am curious.

    • #32
  3. PsychLynne Inactive
    PsychLynne
    @PsychLynne

    Midget Faded Rattlesnake:

    I do wonder, though, how you can tell the difference between misery driven by physical pain and impending death and simple depression. Not that it would necessarily be easy for you to explain to a layman. But I am curious.

    It’s never easy, which is why I’ve only rescinded orders (which involved going against patients wishes) twice.  The things I considered at times like that are:

    1.  Patient history – did they have a history of depression/anxiety?  had they had treatment? did they respond?  It’s easier when I had seen them prior to the end of life.

    2.  Family perspective – what did the family members think?  did they think the patient was depressed/anxious?  I also get behavioral history if the patient can’t provide it.

    3.  Onset of depression/anxiety/wish to discontinue treatment – what was the timeline of the patient’s wishes?  did it represent a dramatic change?  a change in and of itself doesn’t invalidate it, but it’s helpful for the next questions

    4.  Symptom burden – did the patient receive good (or as good as possible) symptom control?  when you discuss their mood is it always related to pain/shortness of breath/lack of mobility?

    5.  Brief pilot intervention – if the patient would consent, we would sometimes give them better pain management or stimulants (e.g., Ritalin) to increase their energy level–if their mood improved, it gave us a window to talk about decision-making with the new medical interventions and think about what they wanted next

    Hopefully that makes sense…it’s a fine line that lacks confirmation you’ve made the right choice sometimes.

    • #33
  4. Julia PA Inactive
    Julia PA
    @JulesPA

    Kay of MT:

    Midget Faded Rattlesnake: “refused to budge until the morticians came to cart her away.”

    That will probably be me. Actually, I plan on having my grandson nail a few pine boards together, wrap me in a sheet, and bury the box in the John Marshall Wilderness. A hundred years from now or later, someone will find my bones and wonder how they happen to be buried there. Nothing like continuing to be a problem long after you are gone.

    mee too, not the pine box plan so much as not budging. :)

    • #34
  5. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    PsychLynne:4. Symptom burden – did the patient receive good (or as good as possible) symptom control? when you discuss their mood is it always related to pain/shortness of breath/lack of mobility?

    That’s a tricky one, I bet, since mood and the sense of physical well-being are so closely linked.

    Never having had great physical health myself, I know how tempting it can be to blame any unaddressed physical discomfort (not trendy) on a mood disorder (trendy). Yet at the same time, it may often make sense to treat the mood of those suffering chronic physical pain. There is only so much we can do about pain right now without sedating, numbing, or otherwise reducing awareness. And people in a better mood for whatever reason usually find it easier to bear or at least temporarily ignore nagging physical discomfort.

    • #35
  6. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    Leslie Watkins:

    George Rapp:

    Leslie Watkins: Following is a comment I made just yesterday at Econ Talk in a response to a discussion with hospice physician Becky Liddicoat Yamarik:

    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.

    Thanks, guys. I was able to listen to the podcast yesterday. I agreed with the doctor’s observation that, as medical care advances, we are more and more often forced to have a choice in when we die.

    Also, the way she described LTACs (long-term acute care facilities), filled with “trached and pegged” patients* was… Well, if the idea of freezing embryos disturbs many who advocate for the sanctity of life, I don’t see how the existence of LTACs could also not disturb them.
    ____________________________________________
    * patients given both a tracheotomy in order to be hooked up to artificial ventilation on a long-term basis and a Percutaneous Endoscopic Gastrostomy, (a feeding tube direct to the stomach)

    • #36
  7. virgil15marlow@yahoo.com Coolidge
    virgil15marlow@yahoo.com
    @Manny

    I have no experience with hospice, but this was a touching essay.  I don’t quite see the Conservative criticism with hospice.  The link you provided argues that some hospice facilities hasten death.  That’s not a criticism of hospice per se, but of flawed facilities.  Hospice is certainly a better alternative than assissted suicide.

    • #37
  8. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    Manny:I don’t quite see the Conservative criticism with hospice. The link you provided argues that some hospice facilities hasten death. That’s not a criticism of hospice per se, but of flawed facilities. Hospice is certainly a better alternative than assissted suicide.

    I get the sense that, while all pro-life conservatives would agree that hospice is superior to active assisted suicide, there are also pro-lifers that worry that hospice care could easily turn into passive or covert assisted suicide, and therefore be immoral.

    For example, choosing a hospice pathway may involve forgoing or removing feeding tubes and ventilators. Now, some Catholics make the following distinction:

    We conclude that the placement of feeding tubes constitutes medical treatment from an ethical standpoint. However following tube placement, a different moral situation pertains: the provision of feeding through such means constitutes ordinary care.

    This seemingly neat and clean moral distinction causes an interesting incentive. If I believed in the distinction, then, if I ever got a feeding tube, I could not ask it to be removed without committing a grave immorality. Therefore, I might choose to forgo feeding tubes altogether, even when a feeding tube might turn out to be a temporary measure on my path back to a normal life. It’s sort of like how very observant Catholics, if they do use contraception, disproportionately choose sterilization – sterilization makes sense given Catholic moral calculus, even though sterilization is in some senses the most “anti-life” form of contraception because it is permanent.

    I’ll note that other Christian ethicists have come up with different answers to the feeding tube question. They reject the labels “ordinary” and “extraordinary” in favor of “proportionate” and “disproportionate”:

    Perhaps a distinction better than ‘ordinary’ versus ‘extraordinary’ is the concept of proportionate versus disproportionate care, which was introduced by Pope John Paul II in his Evangelium Vitae of 1995. This moves the decision from the blanket “yes, no” response into the realm of “maybe.” In other words, it makes the decision context-dependent.

    • #38
  9. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    Manny:The link you provided argues that some hospice facilities hasten death.

    I agree the link I provided wasn’t the best link. I’ve seen better-articulated conservative arguments against hospice elsewhere, but was pressed for time and included the easiest link, not the best. My bad :-)

    • #39
  10. user_1700 Inactive
    user_1700
    @Rapporteur

    Midget Faded Rattlesnake: Also, the way she described LTACs (long-term acute care facilities), filled with “trached and pegged” patients* was… Well, if the idea of freezing embryos disturbs many of those who advocate for the sanctity of life, I don’t see how the existence of LTACs could also not disturb them. ____________________________________________

    * patients given both a tracheotomy in order to be hooked up to artificial ventilation on a long-term basis and a Percutaneous Endoscopic Gastrostomy, (a feeding tube direct to the stomach)

    I wondered about what “trached and pegged” was shorthand for. Thanks for the explanation, Midge.

    • #40
  11. Nanda Panjandrum Member
    Nanda Panjandrum
    @

    During my chaplaincy studies and working life, the provision of nutrition and hydration moved from ‘extraordinary’ to ‘ordinary’ care.  Importance was attached to  the proviso that – once the body has stopped absorbing nutrients and/or excreting waste – the n-g or peg tube may be removed without ”pain of sin”.  Pope St. John Paul II not only promulgated this guidance, he exemplified it.

    • #41
  12. Midget Faded Rattlesnake Member
    Midget Faded Rattlesnake
    @Midge

    Nanda Panjandrum:During my chaplaincy studies and working life, the provision of nutrition and hydration moved from ‘extraordinary’ to ‘ordinary’ care. Importance was attached to the proviso that – once the body has stopped absorbing nutrients and/or excreting waste – the n-g or peg tube may be removed without ”pain of sin”. Pope St. John Paul II not only promulgated this guidance, he exemplified it.

    I’m glad the proviso exists, but I still find the very idea of providing nutrition and hydration through naso-gastric or gastrostomy tubes inherently extraordinary.

    I wonder whether counting feeding tubes as “ordinary” rather than “extraordinary” is taking technology for granted. Keeping people alive who cannot swallow food or drink is really an amazing accomplishment of human artifice! – a novel exception to “nature’s” rule that not eating or drinking results in death.

    (Incidentally, Nanda, if you haven’t already listened to the EconTalk podcast on end-of-life-care that Leslie and George mentioned earlier, I recommend it. I’d be interested in hearing what you think about it.)

    • #42
  13. Nanda Panjandrum Member
    Nanda Panjandrum
    @

    Midge, in physiatry [physical rehab] for instance, the n-g or peg is used to maintain/augment nutrition and hydration after strokes and other neurological conditions which impact swallowing, perception of gastric fullness,  taste, smell, appetite, etc. so the thought is closer to beneficial vs. futile or proportionate vs. disproportionate.  Since the tech is not as bulky/invasive as it once was – and can be managed routinely by instructed family caregivers – the nutrients just aren’t taken in *orally*; IV fluids aren’t either – it’s now seen as ‘ordinary/proportionate/beneficial’.   I would consider it ordinary (for myself, too, incidentally).  I’ll check out the podcast…Thanks!

    • #43
  14. user_2505 Contributor
    user_2505
    @GaryMcVey

    A beautiful “diary entry” to inspire us. Thanks so much, Midge. I offer you my somber tribute to your caring words: I’m sure I’ll remember them, and put the story into practice, at some inevitable later time that’ll be coming to all of us.

    • #44
  15. Pugshot Inactive
    Pugshot
    @Pugshot

    My father died in 2008. He suffered a blood clot and subsequent stroke that put him into the hospital off and on over the last month of his life. Eventually he had a stroke severe enough that it basically put him into a coma. We finally arranged to have him put into the hospice unit at the hospital. The next morning we came in to sign the paperwork and, as we spent time with him, his breathing was very labored. A hospice nurse came in and administered morphine to “ease his breathing.” Within minutes, he stopped breathing and passed away. I was (and remain) convinced that the nurse “helped” him along by giving him an overdose of the morphine. I have mixed feelings about this. On the one hand I don’t support a healthcare provider making “God” decisions; on the other hand, we all knew he was not going to recover and it was just a matter of how long he would remain “alive,” and we also knew he was prepared to leave us. [Sorry about all the quotes!] On the whole, the hospice staff was caring and helpful – maybe too helpful in the case of the one nurse – and I generally support the idea of helping someone get out of the hospital and assisting them to be comfortable at home.

    • #45
  16. MJBubba Member
    MJBubba
    @

    http://www.nationalreview.com/human-exceptionalism/393471/invisible-national-hospicepalliative-care-month-wesley-j-smith

    • #46
  17. Nanda Panjandrum Member
    Nanda Panjandrum
    @

    MJBubba:http://www.nationalreview.com/human-exceptionalism/393471/invisible-national-hospicepalliative-care-month-wesley-j-smith

    Absolutely, MJB!

    • #47
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