My Testimony: Reforming End-of-Life Care

I’ve asked widows and widowers I know to share their experiences with the health care system in America. I thought we’d have unique perspective because many of us have had more experience than the average American with health care and end-of-life decisions.

You can see the list of testimonials here and please note, the project is ongoing. I’d love to have your participation using your own blog, Facebook, or another medium. If you need some help using the index linking service, or if you have other questions, please write to me direct (Supa DOT Dupa DOT fresh AT gmail DOT com).


As for my experience -- I have a lot to say about health care in America, and how the system as a whole has served and failed my family. My husband and I were informed and intensive users of medical services for routine care, to manage chronic conditions, and in his fight against cancer. After 40 years’ experience in what I had come to think was a very “medicalized” life, I feel I can make the biggest difference by testifying about my experience with end of life care.

However: if you are interested in more evidence against the thieves and liars of the private health insurance industry, and their captive government regulators, I’m happy to provide the evidence offline. Just wink.

I’ll also say that a public option is a must: we were fortunate to live in a state that provided a way into private insurance for self-employed people with preexisting conditions. Despite its limitations, we would have been much worse off without it.


The real story here is about death. The inevitable. The universal. Americans don’t ignore it: it’s in the news every day, and gosh we just eat up those vampire books.

But here’s the rub: No one should receive a diagnosis of a stage IV cancer without entering into a conversation about their final wishes.

Yes, you can fight, and you must. Strap on your Bernie Siegel and visualize away. Get everything you can from conventional medicine and stimulate your immune system with herbs all you want. (Nor should anyone be set adrift in a sea of unbelievably expensive decisions. Choosing a path for treatment should not be like choosing an entrée. I wish we’d been assigned a patient navigator.)

But understand at the same time that we are all dying. Gavin and I had had experience already; we thought we were more aware than the average bear. Patients with terminal illnesses and their families lose sight only occasionally of the black wings hovering over our shoulders. We revel in the deliciousness of this day and in gratitude. But that doesn’t mean we’re really dealing with it. Denial is complicated, and honestly, not entirely a bad thing. It can be pretty useful if you have a life to live in the meantime, and don’t we all?

But once you get really sick -- particularly after a catastrophic diagnosis like ours (which can bring on symptoms of PTSD) -- you really won’t want to cope with your will, wishes about burial, or plans for those left behind. Thank God Gavin’s advance health care directive was already in place, because I don’t think we could have done it while he was sick.

Nothing stayed the same for more than a few months. One therapy seemed to push the disease back a bit. Recovering from surgery (Gavin had two big operations) is a hurdle that requires you to build up energy and fortitude. It’s satisfying to have concrete goals. It was easy for us to forget that every step was considered palliative care from day one.

Please don’t get so far into positive thinking and manifesting whatnots that you forget you’re mortal, like we all are. Yes, you might get a miracle; but have a plan B.

At parties, we used to say that Gavin was just dying a little faster than everyone else. When we’d get in the car I’d point out he was at more risk from the daily road risks than from the cancer (especially if I was driving. But that’s another story).

For a time, even on the downhill slope, my dying husband and I were able to adjust to each lesson or new fact or change. But the last six months were a decline of breakneck speed punctuated by the brightest rays of hope: two new drugs were approved.

It didn’t matter. The first miracle drug destroyed his quality of life with fatigue that he couldn’t tolerate, despite the fact that it was working. But it looked like he had a second primary. Then one titanium strut supporting his spine broke. Then, mouth sores. Weight loss. Planning more radiation. Candida. Edema. Shingles. BOOM BOOM BOOM BOOM. Whatever you do under these circumstances, you turn away from earth. We looked up, away from each other. And we got less and less able to talk about “next steps.” The wings were beating furiously, too close. Neither of us wanted to hurt the other.

I know his death would have been easier if we’d entered hospice sooner than 3 days before he died (even the experts didn’t think he’d go that fast). Maybe he could have been at home instead of spending most of the last 2 weeks in an ICU. We might have thought differently about the risks of that second, brutal surgery. I know that Gavin had interventions that were painful, destructive, and expensive – as well as pointless.

Studies have shown that patients have “better” deaths and families grieve differently if they have individual, realistic conversations about end of life care.

Yes, our medical team did the best they could reading our states of mind and the level of conflict -- with the end, with each other -- at each appointment for 22 months. I’m sure they intended to ease us into hospice. If only there hadn’t been so many twists and turns. Or maybe if we’d been more open.

It shouldn’t have been our choice. Maybe it sounds like “planning to die” to you but having this conversation is really the only way to balance your family needs, religious and ethical values, and the non-negotiable reality of biology.

I hope I’ve illustrated how often things can change: how mixed are death’s signals. You can’t really “plan” how it will work out, but if you have an existing relationship with a hospice counselor you can discuss how you’d like to approach different scenarios. An Advance Health Care Directive is just an outline, but it can provide a basis for making ongoing decisions that comforts you and your loved ones who really, I tell you, WILL be forced to make decisions that they will always have mixed feelings about UNLESS you contribute.

It sounds awful, doesn’t it? Having to think about “how” and “when” you might die, about radical interventions, telling your loved ones whether you want food, water, what. But I watched my husband die, and I want to say I’ll never be scared of any conversation again. Words don’t break flesh down to a wisp. Worrying about hurting Gavin’s feelings, or about jinxing his miracle, were inconsequential fleas of politesse next to the Big. Giant. Mortality.

Don’t wait until there’s no “undo.” It’s the process, the conversation, that matters. Perhaps after diagnosis is too late to begin the discussion. Maybe when we hit 50 we should all talk about death. Or 40. It certainly should be part of every pre cana. Maybe it could be included in a rite of passage, if our modern lives would allow such things:

“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.” -- Pope Paul VI (1897-1978)

There are dozens of ways to get comfortable with your own mortality: Art, music, poetry. Psychotherapy, film, faith. Structure, freedom, study. (Bonus: you get to sound "deep" at parties.) But you have just one “today” to begin.

Above all, keep those you love close as long as humanly possible by sharing your thoughts on the end.

* * * Read more testimonials about health care by widows and widowers here * * *

* * * Comments * * *


JoAnne Funch said...

I can't agree with you more in regards to advance planning with advance health care directives, funeral planning, life and health insurance.
We all must be responsible for our own life planning and unfortunately that includes insurance. I was fortunate to have health insurance when my husband was hospitalized prior to his death, but I was not so fortunate to have any life insurance. I was left with debt, a business to run and a house to continue to mortgage on.
I accept the responsibility for our decisions. I believe there is no easy answer to the current health care debate, its easy to say everyone should be entitled to health care coverage but the elephant in the room continues to be who will pay for this.

Anonymous said...

For my late husband, there was no treatment, no cure, And I had to do all the planning because he had dementia from the onset and couldn't participate which made the fact that all I could do was plan for his death - harder.

My father was diagnosed at Stage IV and he and my mother come from the old school of fight even when it means hastening your death. I argued hard in favor of hospice from day one but Dad still went in too late to have the kind of peace he and mom deserved.

Palliative care is a dirty word in the medical community. It's hard to get people - patients and doctors - to see that sometimes it's better to throw energies towards a good death than a miserably lengthened existence. Quality should trump quantity, but that's just my opinion based on my experiences.

Nice post and good on ya for starting the story collecting.

Average Jane said...

When my mother was dying, she refused hospice care and because my sister and I didn't really understand what it was at the time, we didn't push for it. In retrospect, I wish we had understood what hospice could have offered our mother and the whole family. It would have been such an improvement over those last grim weeks in the hospital.

Brenda said...

I so relate to this. We were going to enter hospice the day he passed. We didn't get to talk about his end of life wishes until a week before to sign his will, and the night before to see what he might like for his funeral. He refused to talk about dying, and only could focus on fighting. I admired his strength, but wished we could have talked more about what he really wanted and his hopes for me in the future.
Thanks for opening up this discussion.

Christian Sinclair said...

This post was featured in the November 2009 edition of Palliative Care Grand Rounds!

Congratulations and thanks for contributing to the palliative care blogosphere.

The viewpoint of the bereaved family member is one that has not contributed as much as is possible in American Health Care. There is no systematic way to get this feedback to the system in a way that drives change. I commend you on your goal and would hope to hear more from widows and other family members who may have good constructive insights to provide better care for future patients.


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