by Carolyn Thomas ♥ @HeartSisters
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?
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13 thoughts on “Who will speak for you when you can’t?”
Karen, thank you SO MUCH for sharing that story of your mother.
I too wish that more families were as prepared as yours was. Your mother sounds like she was very well-prepared, and willing to have important conversations about her own end-of-life care wishes with her family and care providers. As I mentioned in this article, families who have never had such conversations are condemning their loved ones to NOT knowing “what Mum would have wanted” – because they WON’T know – and these families are likely why your Mum’s doctor appeared to be so nervous just bringing up the topic!
No need to “dance around” the question of end-of-life care preferences if the whole family already knows our own wishes.
Take care and stay safe. . . ♥
Carolyn, thanks for this comprehensive post on a really important, and, as you say, overlooked topic.
You didn’t mention the “No CPR” medic alert bracelet/necklace available here in BC (and other jurisdictions, according to the web site). This is a joint effort between the BC Ambulance Service and the British Columbia Medical Association. The form/application is signed by a physician for patients who:
“have been diagnosed as having a life limiting illness or are considered to be at the natural end of their life, and
have decided that, in the event of a respiratory and/or cardiac arrest, no cardio-pulmonary resuscitation is to be undertaken.”
The medic alert has engraved on it “No CPR”, a case number (which the EMTs can look up on the spot), a hot line number and the Individual’s name. And generously, “A Vancouver philanthropist has kindly agreed to cover the cost of No CPR bracelets for those individuals who are unable to pay for it themselves.”
Info here: https://www.medicalert.ca/nocpr/ The PDF form to be signed by a physician is linked from this page.
Wearing the No CPR necklace removed, for me, the worry of not being able to communicate with an EMT team, and receiving CPR in an ambulance.
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Thank you Alane for sharing this info on the NO CPR bracelet/necklace from MedicAlert. I have some questions about the registration application, specifically the $60 cost to join MedicAlert (i.e. it doesn’t say this anywhere on the registration form – it may be there, but I can’t find it! – I’m guessing that this is annual fee that must be renewed each year, as all MedicAlert services require. So I wish this were more clearly stated on the form.
I think this is likely the most effective way for those who do NOT wish to have CPR in case of sudden cardiac arrest to communicate with first responders who otherwise would start CPR in the absence of a signed document. And I also appreciate that a physician must sign the application form as well to ensure that our doctors are aware of our medical care goals.
Take care, stay safe… ♥
Another great article here! My husband and I are both 71 this year and in this last week we are each dealing with scans and tests for heart issues – so we are thinking this way.
In the UK there is a health Power of Attorney and a financial Power of Attorney form, however the process of doing it can be costly (over £1k). Sooo we are looking at other and all ways of being clear about what we want. I have downloaded the forms your link provides to read.
My experience with this as a person beside the bed is extensive and traumatic.
My sister had a massive stroke at the age of 45 and had left me (at 47) as power of attorney but with no health instructions. She was very vociferous in her expressions all of her life that she never wanted to be disabled and did we all understand that she did not ever want to be resuscitated. We humoured her as she was obsessed with everyone knowing. She must have known on some level of the possible future she was now living out with the stroke.
As she was in a coma for weeks and had open heart surgery after the stroke, I made contact with a lawyer and asked for family and friend witnesses to accompany me to court where a judge gave me a DNR order. I was helped with the process by a charity in New York entitled Concern for the Dying. I found out about them by going to a local bookstore (this was 23 years ago -no internet) and going to the legal section.
They advised me to speak AS MY SISTER and to use that statement in all dealings with the court and with the doctors in intensive care at the hospital. This was KEY to them listening to me. I became my sister ‘virtually’ and spoke as her when I spoke with the doctors and nurses about what she wanted.
YET, they DID resuscitate her —- after she woke up out of the coma and then had a major heart attack all within one day. The same day – as it happened that I got the court order.
After me explaining to her what happened to her (she was paralyzed on both sides of her body) she said to my aunt and uncle at the time that ‘if I had a gun I would shoot myself’. That night during dialysis the kidney doc DID resuscitate her. I yelled at him the next morning and said I felt he was the kindest doctor in intensive care and that my sister would have benefited from his loving and caring presence as she died from the heart attack that night.
He apologized to me three days later and said if I were your sister I would not want to live either.
The hospital head doc of intensive care threatened me one morning and made me witness him taking her off the ventilator and start to gag. I was alone that day as my husband was at my sister’s house that morning and I believe I was abused by that doctor. He said I would have to witness him doing this in the next few days. I said I would bring my cousin – my sister’s closest friend – and we would do what we had to do to follow my sister’s wishes.
This is the point I want to make as a response to your blog —– doctors are taught to do everything to support life and many of the nurses on the ward that day supported me in what I was doing FOR and AS my sister —- BUT he – the man in charge – he clearly took me as a threat.
He told me later insurance would not pay for her being in intensive care with a DNR order any longer.
(Something else to consider).
SO – a long response here Carolyn….but just to say — yet again — you bring up very important points about what we need to do in practical terms – for each other – at the end of our life process here on earth.
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Hello Isabella and thanks very much for weighing in on this important subject. It’s so awful that you had to go through your sister’s dreadful experience, being her voice during an experience where her voice could not be heard. It’s particularly shocking that the intensive care physician would have treated you in that heartless and inexcusable fashion – as if to teach you some kind of lesson.
ICU policies have been in the news during the pandemic, as hospitals weigh their “save at all costs” approach to resuscitating a dying patient “against the real danger of exposing doctors and nurses to the contagion of the virus.” Some American hospital networks for example were at one point even discussing blanket do-not-resuscitate policies for infected ICU patients regardless of the wishes of the patient or their family members, in order to protect staff from becoming infected during resuscitation. A similar panic evolved in the UK as the world heard COVID-19 stories of ICU docs in Italy and other hard-hit areas limiting lifesaving procedures to younger healthier patients only.
This is not an exact science yet.
Even with a written Do Not Resuscitate order, we know that paramedics or firefighters responding to a 911 call will often start CPR immediately unless the DNR order is at the scene (they won’t be doing a search of the house looking for one). And where I live, in Canada, we don’t have a central electronic database tracking our DNR orders across the country.
But it’s also important to remind readers that a DNR order covers only chest compressions/shocks to the chest during cardiac arrest – not other life-sustaining treatments – hence the need for a comprehensive Advance Directive that covers more than just cardiac arrest.
Over £1,000 for a Health Power of Attorney?!? That’s appalling – I wonder if that has changed yet? I found an NHS site on Advanced Decisions/Living Wills that suggests, as it is here in Canada, that signed and witnessed (free, downloadable) Advance Directives are considered to be legal documents.
Thank you again for such an important comment. Please take care and stay safe …. ♥
Hi again Carolyn,
Thanks so much for these links!
Our lawyer here in the UK told my husband and I that the two powers of attorney (health and finance) would be £1k in total for the two of us together to be clear. I should have made that clearer in the post.
Also, one more positive think about my experience. As it happened, within two days, my sister’s heart rate dropped to 30 beats a minute and my cousin and I DID NOT have to witness her gagging as he was set to do. Whew! I did not want that picture in my brain as you can imagine.
With thanks again,
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Hi again Isabella – the image of your sister (which that cruel ICU doctor had already demonstrated in his inhumane sneak preview to you, watching her gag for air) must have been almost impossible to get out of your mind. So traumatic, and to be alone by your sister’s bedside forced to watch that…
It was a real blessing that what he was deliberately predicting did not come to pass after all.
It was 11am in the morning when he phoned me and he said ‘well, your sister’s heart rate is now 30 beats a minute…you better get in here soon. Looks like you got your way.’
On the way to the hospital I sang thank you thank you thank you to my sister, for she spared me witnessing that with her — I knew she was on her way ‘home’ to heaven to be with our parents! When I got to the hospital, her breathing had stopped and she was truly gone.
It is important to remember that doctors are humans and do not necessarily have their emotional heart self together. I did stand up to him and he did not like it.
Many thanks Carolyn for holding the space for so many of us to heal and to further open to our heart’s journey….
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Such a good point, Isabella: family members are hardly the people in the room who are most competent to “stand up” against a doctor who is providing care to our family members. It takes great courage to have the presence of mind to do that while at the same time grieving and overwhelmed..
Doctors are indeed human, but that ICU doctor had reduced your sister’s experience to a win-lose scenario (you “won” because you “got your way”?!?!?! ) – as if HOW your sister died had been a frickety-frackin’ competition to see if his prediction would be correct? That’s monstrous…
Physicians who force family members to resort to being that courageous during such a devastatingly difficult time by reminding them who the doctor in the room is would benefit (as would their future patients) from doing the same training rotation with hospice palliative care experts that our family practice residents used to do for three weeks on our 17-bed inpatient unit…
My concern: ICU physicians have these kind of difficult conversations every day, given how sick ICU patients tend to be (in North America, one in six people die in an ICU).
This review article published in the New England Journal of Medicine on “Dying With Dignity in the Intensive Care Unit” goes into detail on this need, especially what the authors call the “ABCDs” of dignity-conserving care (Attitudes, Behaviors, Compassion, and Dialogue. Yours could not possibly have been the first case treated with such lack of dignity… That’s the true tragedy. here…
Carolyn, I don’t think there’s any way to make this story short, but your post and its question hits so close to my heart, I feel like I must share.
First of all, I’ve lived with chronic illness for all of my adult life. As a very young woman I learned that there are things worse than death, and my husband and I talked openly about that early in our marriage. He’s always known what my opinions are, although as you said, the years when I was raising young children certainly affected my will to push through pain and suffering in a unique way.
Unfortunately, in early 2019 I fell victim to a botched colonoscopy which resulted in two emergency surgeries, sepsis, and unable to come out of anesthesia. I was on a ventilator for ten days, and although my family was only vaguely aware of the unbearable pain I was in, my husband knew in those last few days that it was time to seriously consider my professed opinions. Whether or not I would recover was a less than 50/50 chance and he knew that I did not want to spend the rest of my days like that.
But, I had never done more than talk.
This poor man, my partner in all things for 30 years, was left with the responsibility of deciding whether or not it was time for me to leave him and die. He had the support of my family–everyone (our children, my parents, my brother, close friends) respected whatever he decided, but the decision was really his to make alone. Months later, I learned that he had woken early in the morning on the tenth day praying for strength to ask the doctors to let me go. As one last goodbye, my family and friends gathered around me … and I “woke up.” I put that in quotes, because the experience felt far more like swimming upwards from the bottom of a deep pool, fighting the weight of the water above you, than the on/off sense of waking from sleep.
What I’m about to say now, I always qualify with this: Don’t get me wrong, I’m glad I survived, I’m happy to be alive and it was worthwhile to go through the recovery.
But that recovery was its own version of hell. I was in constant pain, I was too weak to even sit independently, learning to walk again was excruciating, the tube had damaged my vocal chords leaving me unable to swallow or talk for months, my cognitive function was damaged (fortunately that was also temporary), and my heart and lungs kept trying to fail.
I never want to go through that again. I don’t think I have the strength. I don’t want to find the strength. Neither do I want to put my husband and family through that again. What a decision to have to make — and he had their support and a baseline knowledge of my feelings.
When Covid-19 became a serious threat knowing that, like you, I am at higher risk of contracting it and if I do, at high risk to find myself on a ventilator once again, I downloaded an advance directive form. I spent that Saturday morning committing my thoughts to paper. I read them aloud to my husband, and brought them the next week to my daughter and sister-in-law to witness.
I have been pleasantly surprised about two things. I am at a lot more peace about the prospect of possibly getting that sick. I still live in terror of not being able to breathe (been there, done that, not fun) but I also know that I won’t have to live long in a condition I don’t want to be in.
More important to me is that my family seems to be far more reconciled to the idea of letting me go–partly, I think, because they’ve already had to do it, and partly because they really know what I want.
Sitting down to write your end of life plans was difficult. I cried as I worked through the document. But, the benefits far outweighed the potential costs for me.
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Thank you so much for eloquently sharing your perspective here. It’s so important for others to know that being miraculously “saved” isn’t always how it looks in the movies and TV series, where heroic doctors perform their lifesaving miracles and in the very next scene, the perfectly fine patient is discharged from the hospital, tapdancing happily down the hospital corridor on their way home, alongside celebrating family members with armloads of flowers.
I’m sorry that you suffered so much last year. I’m also picturing that dramatic scene with your family gathered for “one last goodbye” – they must have all gone crazy to see you “awake”.
Thank you also for mentioning what I and many others before me have experienced: this surprising sense of being “at peace” as soon as you did your advance directive IN WRITING.
Please take care and stay safe… ♥