Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

20 responses

  1. Thanks for sharing your sister’s story Fran, and the touching words about her. It’s great to see that you take comfort in the choices she made.

  2. Choices make all the difference, Michael. If this piece encourages just one person to consider his or her own, I would be delighted. You DO have your advance directives done, don’t you?

  3. Your post caught my eye because I have just said goodbye to my mother in the same fashion. Such a sad errand is never easy, but I am grateful for these last caring, intimate weeks we had together under the umbrella of hospice, when we stopped fixing things and started accepting them. I imagine your parallel experience, and hope that along with the sadness of the occasion, you, too, saw the beauty in it. Condolences to you and yours.

    • Thanks, and reciprocal condolences to you, mdtaz. Hospice care ranks right up there with the newer-edition palliative care; both are wonderful answers to the cultural notion that we should fix forever. There is indeed beauty in acceptance. I wish peace for you & your family.

  4. Expressing ones end of life wishes should be a requirement for participation in Medicare. Revise your wishes annually or bi-annually to keep up with changes in your health. All too often, when a dying patient’s wishes have not been communicated, family members are left making decisions they are wholly unprepared to make. Having their loved one’s wishes as a guide very much eases the decision.

    Private insurers would save money by giving participants a rebate for filling out a living will. Wish for whatever you like in your living will. Some will want the tubes, ventillators, and medicine. Not many. Most people who have living wills ask to be made comfortable when the end is near. Makes sense.

    Death Panel paranoia was political polarization to the extreme. It had nothing to do with reality or what people actually want when they are dying. I wonder if Palin has a living will?

    • Those are some really fine ideas. If insurers offered rebates (or ANY incentive) for completion of advance directives, millions might be saved through avoidance of futile interventions people didn’t want in the first place. And I wish everyone could understand that advance directives can say “Do everything!” Some of the ‘everythings’, though, are pretty gruesome and at some point no thing will prolong life forever. Wouldn’t surprise me if Sarah Palin feels herself immortal. Thanks for your good comments, gitchigummi.

  5. Very nice post Fran; my condolences on your loss.
    We have been trying for years to discuss these things with my parents, and they keep saying ‘we know’, but the conversation never happens. Your post reminds me to once again try and initiate the discussion.

    • Bless your heart, Mike, but not your parents’ reticence. Please tell them I’ll bet I’m older than they are and talking about death hasn’t killed me yet. I talk about it, among other reasons, because of the conviction that facing the reality of death — and making one’s choices known — can lead to living life more fully. And usually does. I’ll be glad to send you some aids to starting the conversation if you want. (T/S will pass along such a request.)

  6. Thanks for sharing your story about your sister. Your post today moved me to follow one of your links and finally find the legal paperwork I need to complete a living will document–something I have had on my ‘to do’ list for a few years.

  7. Thanks for sharing your sister’s story, Fran, which reminds us how important it is to be able to make the end of life choices that suit us as individuals, according to our personal beliefs and wishes. I enjoyed looking at Jane’s paintings–was
    she working on them even at the end?

    • You are so right about the choices, Susan! That’s why I stay up on my sometimes obnoxious soapbox all the time. Jane had a studio at her home and another with The Village Painters; she was adding new works in the days before she died, and probably left a few still in progress. We should all sign up for such lengthy productivity.

    • Thanks a million for calling attention to that good story! It illustrates the multiple benefits that often come from choosing palliative care over aggressive interventions. One hesitates to bring the cost-saving issue in, because choices should be made on other bases. But between you and me I also would choose to spend all those millions on, say, uninsured children, and skip the intensive care when I conk out.

  8. Pingback: Is your cell phone frying your brain? - Fran Johns - Boomers and Beyond - True/Slant

  9. Pingback: Grief: A mind/body conundrum - Fran Johns - Boomers and Beyond - True/Slant

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