Would you like a morning or afternoon appointment? Which colour do you prefer? Paper or plastic? Do you want fries with that?
On an average day (and do those even exist anymore?), we speak up freely when we’re asked countless minor questions about what we want. But what happens if we’re being asked the most important question ever – yet we’re no longer able to respond? . .
That’s what my family doctor wanted to discuss during our last in-person appointment, back in early March before the world seemed to close down. She pulled out a form called M.O.S.T. for us to consider together. Medical Orders for Scope Of Treatment is a provincial initiative here on the west coast of Canada to help our family docs discuss patients’ end-of-life care wishes – long before death is anticipated.
She and I talked about my own goals of care, particularly what would happen to me if I become incapable of speaking for myself about what medical interventions I want or do not want. Our personal care goals may change depending on many factors; the way I would have responded as a younger woman with small children, for example, might be different than how I’d respond now as an older woman living with serious chronic health issues.
Back in March, with growing COVID-19 fears looming worldwide, I’d already been thinking a lot about what would happen to me if I caught this virus, if I were hospitalized, if I were put on a ventilator. I’m a heart patient, part of a high-risk group, statistically more likely to be infected and significantly less likely to survive. Those are sobering realities for anybody to contemplate.
This chat with my family doctor took only about 12 minutes; my own wishes are fairly straightforward, and being able to run my preferences past her helped to reassure me.
We each signed the form, which became part of my medical chart, and I went home with a copy to share with my family, too. (The M.O.S.T. document is part of an Advance Care Plan package, and I can edit either at any time should my preferences change; Even with a M.O.S.T, I will always be asked to provide medical consent as long as I remain capable).
Having spent many years working in hospice palliative care, I know that end-of-life goals vary widely, and for many reasons. Some people say, for example, “I want to be pain-free, no matter what”, while others may insist, “I want to be alert and present, no matter the pain.”
Nobody can know your own care preferences – unless you talk about them. Even better: put them in writing, as my doctor and I were able to do with my M.O.S.T. document.
My own rationale for choosing my end-of-life goals went something like this (and I quickly add here that these are my own specific and personal goals, and NOT intended to be compared to anybody else’s):
The first thing I shared with my doctor was my overall belief that I have had a long and remarkable life. I’m in absolutely no hurry to die, of course. But I’ve already lived far beyond what I anticipated when I was initially misdiagnosed in mid-heart attack in 2008, and then also diagnosed with inoperable coronary microvascular disease in 2009. I live with significant daily cardiac symptoms, including chronic refractory angina (that’s chest pain that does not respond to standard medical treatments). And I believe that, for some people like me, death is not the worst thing that can happen.
More importantly, there was something else I wanted my family doctor to know about me: I told her that I had spent 10 years visiting my friend Ruth in a longterm care institution after her devastating stroke. Those years had a profound and life-altering effect on me.
She was in her 70s when she was found one day by a neighbour lying on the floor of her bedroom, where she had been for at least five days, severely dehydrated, barely able to move or speak because of the stroke. We were so happy at first that doctors had somehow been able to save her life. Yet watching the debilitating decline of this brilliant, vibrant person, month after month, year after year, for 10 miserable years, made me weep with despair when she whispered to me.
“Every day, I wish they had not found me in time to save me.”
I knew that none of us can predict how we’re going to be spending our final days on this earth, but I sure knew what I did NOT want.
And that’s what my M.O.S.T. document would now be able to say on my behalf to both my physicians and to my family: no heroic or futile medical interventions that might save my life, but might also land me in institutional care like Ruth’s for the rest of my days.
Without such a document, an Emergency or Intensive Care physician who doesn’t even know me can be thrust into the middle of a dreadful tug of war between those who may be reluctant to prolong my suffering vs. others who insist that everything that can be done must be done.
Although (as I wrote last week in my post about the need to update your will), being able to clearly state your preference about such issues is important, many of us don’t like to talk about death, or think about death, or pull out a form at a family dinner and announce that we’re all going to listen to Mum’s final wishes tonight. . .
In his New Yorker interview with Dr. Atul Gawande, Dr. Gregory Thompson, a critical care physician in La Crosse, Wisconsin, warns that future care goals should be known by the patient’s family and physicians early, instead of waiting until “you’re in the middle of the I.C.U. in the throes of crisis and fear”.
If you’re a heart patient or are living with any other serious chronic illness, these are some of the M.O.S.T. questions to discuss now with your doctors:
- How might my illness progress?
- What treatment decisions might I have to make in the future?
- What are the possible complications I might experience with my illness, and what are the possible treatments?
- What are the risks and benefits of certain medical interventions I might receive (CPR for example?)
Sadly, even those living with a terminal illness diagnosis may not be talking openly with their physicians or family members about their own end-of-life care preferences.
An odd thing seems to happen when such patients are able to have this discussion. In this study on terminally ill patients in Denmark, for example, 90 per cent of patients with heart and/or lung conditions who had an advance care planning discussion were still alive one year later compared with 67 per cent of those who did NOT have that discussion. The only difference between how the two groups were treated had been having one discussion with a healthcare professional about the patient’s end-of-life care goals.
Yet an earlier study called Coping with Cancer found that two-thirds of the patients living with a terminal cancer diagnosis reported having had no discussion with their doctors about their goals for end-of-life care, despite being on average just four months from death.(1)
The one-third who did have this discussion about their goals reportedly suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Six months after these patients died, their family members were also “significantly less likely to experience persistent major depression compared to family members of patients who did not have this discussion in advance.”
Like me, you probably had distinct goals for how you wanted your first childbirth experience to go. You likely had many discussions with your physicians, family, midwife, girlfriends about that important upcoming event – what you wanted, what you didn’t want. I’m guessing that not even one person close to you ever wondered whether you wanted a home birth or a planned C-section – because you spoke openly about your own personal care goals then.
You must have similarly personal goals about your ultimate care experience, too. Like pregnancy plans, all end-of-life care plans can change at the last minute, but your family doctor and your family members deserve to know what your goals are in the first place.
Every plan starts with a conversation. This link is what we use here in my Canadian province of British Columbia, but may help to kick-start your own discussions. Seek specific guidelines in your own area about issues like advance care planning, family conversations, substitute decision-makers and other important topics.
Just like preparing a valid Will to go alongside, make sure the people who need them, can find your documents quickly. More importantly, make sure everybody already knows just what your personal medical goals are.
There are few more tragic scenarios in medicine than the family members of a dying person arguing amongst themselves about two diametrically opposing care options on “what Mum would have wanted. . . “ – all because Mum had never communicated what kind of care she actually did want.
Take care, and stay safe. . .
1. Wright AA, Ray A, Zhang B, et al. Medical care and emotional distress associated with advanced cancer patients’ end-of-life discussions with their physicians. Journal of Clinical Oncology. 26:2008. 2008 ASCO Annual Meeting.
Image: Michael Gaida, Pixabay
NOTE FROM CAROLYN: I wrote more about common cardiac meds (and managing side effects) in my book “A Woman’s Guide to Living with Heart Disease“. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Q: How has talking about end-of-life care goals – or the absence of such talks – affected your own and your family’s experience?