Death & Dying, Long-term care options

Hospice and Midwifery

A few weeks ago, I was behind a car with a rear-window decal that read “Midwives help people out.” If midwives usher people into life, hospice ushers them out, with much the same non-invasive and natural philosophy of, respectively, life and death.

A few days later I read an old blog post by a pastor friend confirming my thought. “It’s one work that faces in different directions. In one, releasing efforts to [hold on] and trust the new life wanting to birth through them. In the other, letting go in order to embrace the next stage. Both are bridging the past and the future” (Mahan Siler).

When I told a friend, a former hospice chaplain, that my mother has seemed better in some not-quite-definable way since hospice care began, she said she had often observed seeing people loosen their grip on control a bit, allowing themselves to move toward the next stage. (There is both sadness and relief in that for me.) Perhaps I, too, have let go of feeling like I have to be in control of all things, letting them carry some of the burden, as I observe a bit more (albeit fluctuating) patience in myself. Their call is to minister to the whole family, not only the patient. Mama’s doctors don’t do that, nor did home health in their brief sojourn with us (“And the Beat Goes On”).

The hospice nurse doesn’t think Mama will be able to stay in hospice beyond the three-month review. She can’t document decline, meaning her blood pressure, oxygen, heart are perfect; her strength undiminished. The nurse can’t see, in 30-minute weekly visits, the subtle changes in Mama’s memory and the abilities her decreasing vision robs her of—and Medicare doesn’t care about that anyway. When I saw the decal, my thought was that to qualify for a midwife-assisted birth there must be no existing complications; for a hospice-assisted death, there must be a documentable increase in complications.

I’m reading a book—that I bought, after dog-earring 20% of the first 50 pages of the library book containing passages I want to re-read or share—by Atul Gawnade. Being Mortal is about the inescapable realities of aging and death, and about how what medicine can do often runs counter to what it should do. It’s appalling the suffering modern medicine has inflicted on families and individuals in the name of a desire to achieve the impossible: eternal life. Dr. Gawnade shares a portrait of what happens to the body as we age. And it happens to everyone who lives long enough to experience it. It’s fascinating, especially living cheek to jowl with my mother.

But this post is about how this country cares for our increasing number of old-old. I will save the aging process for another post. Dr. Gawande reports a study from the University of Minnesota several years ago that found patients who had seen a geriatrics team were 25% less likely to become disabled and half as likely to develop depression. They were 40% less likely to require home health. A few months after the study results were published, the University closed their geriatrics division and the twenty members of the proven geriatrics team were laid off. The University couldn’t sustain the financial losses  that insurance wouldn’t pay for (Gawande, p. 44). Gawande muses that if scientists could develop an implantable device that would give the same stunning results, there would be a campaign demanding that insurers pay for it and that every person over 75 have one.

Gawande asked the lead researcher what could be done to ensure that there are enough geriatricians for the surging elderly population. “Nothing,” he said. “It’s too late.” Gawande says, “Creating geriatric specialists takes time, and we already have far too few. Not nearly enough doctors will complete training in the U.S. (other countries are no better, some are worse) to replace geriatricians who are retiring, let alone meet the needs of the next decade.” There are no geriatricians closer to us than Seattle—two hours away and two hours back (on a good traffic day), a trek that is exhausting for both of us. But there is an amazing hospice team that meets Mama where she is. We have one more month until evaluation.

There are eight “Activities of Daily Living” required for basic physical independence: use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk. Medicare will pay for the help and equipment needed to do any of these in the home. Mama can do all of them.

Of the eight “Independent Activities of Daily Living” required to live safely on your own— shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—Mama can do none. She is almost 100% dependent on me and her other care partners for these necessary tasks. Medicare pays for none of them; and yet having help to do them keeps the elderly out of the hospital and expensive care units, which insurance would pay for.

The statistics of the number of family caregivers who get sick themselves (requiring premature care) following the death of their loved one is a disgrace. I am part of a group of family caregivers, many of whom are wives—themselves elderly—caring for husbands, with little or no help. It worries me for them. Yet, what are the options for people who can’t afford in-home care or don’t have unpaid family members able to help? Government supported institutional care, I guess. Someone else can do that math.

I am blown away by hospice’s service to the dying, just as I am of the work of midwives bringing forth new life. A lifetime ago I wanted to be a midwife, and later dreamed of being a doula. And now I am a doula, assisting my mother toward letting go. Sometimes we misread the call.

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14 thoughts on “Hospice and Midwifery”

  1. Gretchen,

    Your site was brought to my attention by the wonderful, Karen Maezen Miller: I am excited to explore it. I have been thrust into caregiver mode since my 86 yr old mother arrived to my neck of the woods last March, in terrible health, with shockingly little money, and an endless list of needs. The learning curve has been steep, and the progress to accomplish things, slow and often disappointing. I am an artist by profession and have not stepped into my studio since she arrived. There have been some small miracles in that we found her a tiny place to live that is close and inexpensive. And some lovely moments as we get to know each other in a whole new way. But, wow….so overwhelming, too. Anyway, I could go on and on painting the picture, which I can see from what little I have read so far, is not necessary. Just want to say thank you and I very much look forward to learning and to joining into the conversation. I am so grateful to Maezen for letting me know about you!


    1. Oh, Clare. Your words brought tears. It’s so hard. I do hope in some small way, my blog will bring…well…something. At least to know you aren’t alone, though it will feel like it. Thank you so much for telling your story here, for your honesty and vulnerability. I most love it when people use this space to share their own story. Thank you to the amazing Karen Maezen Miller for the intro.
      I have been lucky to be able to carve out time for myself, and to have sisters who step in (though one is far away). And lucky that my mother is in amazingly good health; if only she could see. And that she has resources. Still, it is hard to be the primary caregiver. My writing studio does not see much of me, either. Nor does my cat.
      Best of wishes to you. I’m going to send you an email, so you will have my address. Write anytime. I will write back.


  2. Michal and Jo Ann had the same thought I did. This is a cause that needs more voice. Unfortunately those who can best voice it; geriatricans, the elderly, or the elder care-givers are either diminishing/disappearing, too aged, or too busy/exhausted to have time or energy. And there’s no money in it. Or is there? What you are doing every day and the sacrifice you make by this choice are beautiful (from where I sit) and totally unacceptable from a social standpoint.


    1. Every policymaker should read Gawande’s book. Part of his thesis, though, is that in “his” country—India (which he left as a child)—and many other non-industrialized countries, family caregiving is expected. The elder generation lives with the children, and are cared for by them. (And caregivers have peer support, because everyone is doing it—all families are multi-generational.) They are not, however, kept alive by modern medicine, as they are here; and they are revered, as they are not here. It strikes me that it is the same dilemma as abortion: keep the unwanted babies alive, and ignore them when they are born. Someone else’s problem then.


  3. As usual your writing is illuminating. I wish you and your mother an easier path than you’ve trod so far. Life is not easy, but we shouldn’t make it harder than necessary.


  4. good idea to send to Bernie and Hilary – and anyone else we can think of. lots of education needs to take place. this brings back many, many memories.


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