Preparing for death by making peace with it
Source: How to Die Well, According to a Palliative Care Doctor
Writer of words, feeler of feels. Copywriter and Co-founder of Intangible Goods. http://www.markstarmach.com
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Illustrations: Mark Starmach
First, you withdraw.
Life shrinks down to the size of your home, then to your bedroom, then to your bed—sometimes over months, but more often over weeks.
Old joys stop having the same pull.
You eat less, drink less. Have less interest in speaking.
As your body’s systems start shutting down, you have less and less energy.
You sleep more and more throughout the day.
You start to slip in and out of consciousness and unconsciousness for longer periods of time.
Staying alive starts to feel like staying awake when you are very immensely tired.
At some point, you can’t hold on any longer.
And then you die.
A calm fall into a cosmic sleep.
But that’s not even the half of it.
“There are four ways people tend to die,” the older woman opposite me says as she reaches for a napkin and a ballpoint pen.
This woman is Dr. Yvonne McMaster, a retired palliative care physician turned campaigner for the cause. You see, soon after she retired, Yvonne discovered that government funding to her old workplace had been stripped. So she started a petition and, over the past five years, has collected over 85,000 signatures to reinstate funding to palliative care across the state (a task she achieved last year). Throughout, I’ve had the pleasure of shadowing Yvonne off and on, helping her with speeches, social media, etc. Today we’re at a cafe in her neighborhood to plan an upcoming newsletter.
She wears a bright yellow blazer, as she always does, and sips tea with a slice of lemon, as her mother always did.
Being privy to Yvonne’s campaign over the past five years and having seen the level of misunderstanding around palliative care and euthanasia and end of life care in general, I’ve picked up some bits and pieces that not many people know about but a great deal of people could benefit from. As my conversation with Yvonne turns toward this topic, I remember one of the first things she told me—the four ways of dying—and ask if she can refresh me on them.
“Well, there are four ways people tend to die,” she repeats. She draws an L graph on a napkin, labelling the tall axis “health” and the bottom axis “time.”
“The first is very sudden. This might happen, say, in the case of a heart attack or a car crash,” she draws a line that runs along at full health, before falling suddenly down to zero.
“But not many people die this way,” Yvonne explains. “We’re so healthy, you see, that our deaths tend to be more drawn out. The vast majority die in one of these three other ways.”
She draws the next three graphs.
The second looks like a plateau followed by a steep slope down. This is what it looks like if you have a disease like advanced or untreated cancer: You’re quite healthy for quite a while, experiencing only a gentle decline, before the disease rapidly wears you down. According to the geriatrician Joanne Lynn, who developed these graphs, about 20 percent of people die this way—and in Yvonne’s words, “all in all, it’s not a bad way to go, especially if you have good palliative care.”
The third is a more gradual slope down, marked by several deep potholes. This symbolizes a chronic condition that causes nasty episodes over time, which often require hospitalization, that you only partially recover from. This is typical of diseases like organ failure, chronic heart failure, emphysema, and many others. Death may come during one of the dips, if treatment fails. About 25 percent of people go this way.
And then there’s the last one. A wonky winding down toward death, as the body wears down from niggling conditions built up over time. As your health becomes more and more frail, dying often follows a physiological challenge that would’ve been quite minor in earlier life, such as influenza, infection, or a broken bone. An illness like dementia can also follow this path.
“The last graph is by far the most common,” Yvonne explains. “But, of course, you’re prone to experience some combination of them all. Knowing which trajectory someone is on can help you care for them better. It helps you make better decisions.”
I think about how much of human life is wrapped up in these simple markings on a napkin and of all the people Yvonne has helped navigate these graph lines.
There’s a story she often tells about a man in his sixties, who she treated for a tumor the size of a cauliflower sprouting from his neck. It caused him terrible pain. It oozed. It stank. He’d almost given up hope. Yvonne placed him on steroids to shrink the tumor, then checked in on him each week, to be with him on his journey.
Each time she came by, he’d reveal a little more of his life. In a strange piece of post-war irony, the man was German (Yvonne is Jewish) and had fought in WWII. He told Yvonne about serving on the front when things were quite bleak: frozen fields, barbed wire, that sort of thing. At the end of a day’s fighting, a trumpet voluntary would play. He explained it had come from ancient times, when the wounded would raise their hands to be scooped off the battlefield by medics in horse-drawn carts.
One time, as Yvonne visited him, he played a trumpet voluntary on an old record. It was his way of saying goodbye and thanking her for scooping him up when he had felt so helpless. Six weeks into Yvonne’s visitations, he died peacefully with his wife beside him, his life neatly rounded to a close—and Yvonne was happy to have played her part.
Palliative care runs so contra to our ideas about medicine and what doctors do.
Palliative care is a tricky thing to explain to people. I think it’s because it runs so contra to our ideas about medicine and what doctors do. Throughout our lives, we see the counterpart—curative care—played out in the form of surgeries, procedures, therapies (like chemotherapy or immunotherapy), and various other medical interventions that fight or fix the direct cause of an illness. We see it on TV shows like ER and Grey’s Anatomy and just about any daytime soap opera.
Meanwhile, palliative care is somewhere in the background. It’s supportive medicine and therapy in the form of symptom-controlling medication, rehabilitation, and counsel, which doesn’t necessarily cure illness, but does make it easier to cope or recover. Curative and palliative efforts complement each other. Curative care makes you get better, but palliative care makes you feel better, kind of like how a sore throat lozenge soothes your throat even if it doesn’t “cure” the cause of the soreness.
As we get older, however, many of us develop conditions that are life-limiting, chronic, or terminal. (Life itself is a terminal condition, as Yvonne likes to remind me.) And this is when palliative care comes more into the foreground, focusing on a patient’s quality of life, symptoms, and emotional wellbeing, as well as the welfare of their loved ones. It doesn’t focus on curing but it isn’t “giving up,” and it doesn’t necessarily mean that death is imminent; many people receive palliative care for years.
It also isn’t the same as euthanasia.
“I’m terribly conflicted on euthanasia,” Yvonne says casually as she sips her lemon tea. “In my experience, it is very rare to treat patients for which nothing can be done to palliate them, and they must endure terrible pain toward the end. In my entire career, I’ve only had two patients like this. At the same time, if I personally developed motor neuron disease or dementia, I would be profoundly relieved to know that, if the going got too tough, I could end it all simply and easily with a medicine or injection. The problem is how you regulate it and under what circumstances it becomes an option. Oregon offers some ideas, but must be done within six months of death and doesn’t currently apply to dementia or other neurological conditions.”
Yvonne expresses her concern for the extent to which euthanasia would morph the practice of doctors and nurses—but nonetheless offers a story in which it greatly helped.
Death isn’t always something to fear.
“There was a man once,” she starts, “in a cancer support group that I sit on. His name was Jack.” (Name changed for privacy.)
“Jack had a brain tumor. Having a father who had died badly from cancer, he saw the road ahead and didn’t like what he saw. He feared he would become totally incapacitated. He was determined to end his life on his own terms. Naturally his wife and him asked their doctor about euthanasia but were told it wasn’t legal—and so they sought other options,” Yvonne explains.
“They found a group in Switzerland, where euthanasia is legal, who help make the arrangements for people wishing to be euthanized. Coincidentally, their daughter was getting married in London later that year—and so, Jack and his wife booked a European tour, to visit the ancient cities, watch their daughter be wedded, and say goodbye in a little blue house in Switzerland. It was such a perfect end for him”
Yvonne loves his final words the most. After taking a swig of the lethal medicine, Jack said to his family, who were gathered all around, “I want you to know that I am extremely happy. I love you all—and that is good stuff because I can feel it working. I’d better lie down.”
Hearing stories like Jack’s helps us see that death isn’t always something to fear, and the more we’re exposed to these stories, the more clearly we can think about our own death and maybe even plan for it. Because if you’re uninitiated, the flurry of human institutions you’ll likely encounter at the end of your (or a loved one’s) life is, quite frankly, a mess.
The first port of call for many is the hospital, when something bad lands us in the emergency room. From here you might be shuffled into a general ward or, if it’s really bad, the intensive care unit. Here, doctors will talk to you about your options. In the general ward, you’ll typically be nursed back to a stable state and then sent home.
If your outlook is grim, however, you may be moved to one of another set of institutions: either a palliative care unit (also called hospice in certain countries) or a residential aged care facility (once called a nursing home). The care you receive in each of these institutions can vary greatly, depending on your level of health coverage, how much money you can part with, your condition, and your location. Bad care can leave scars. Good care can make all the difference in the world.
This may be where your journey ends, but if not, you’ll likely be sent home.
Home offers a familiar respite amidst the storm, but may be reshaped by your embattled condition. You may need a walker or other mobility device. You could need help of a more human kind; this can be a part-time carer, a social worker, an occupational therapist, or a full-time carer to help with life’s most basic tasks: showering, walking, cooking, and going to the toilet. Loved ones may help shoulder the load, but the responsibility is immense and, Yvonne tells me, many feel guilty that they haven’t done enough. Often, too, in the case of emergency or distress, the only recourse is to call for an ambulance and go back through the process all over again—though a good death at home is possible with the right support team in place.
An advanced care directive (ACD) can help determine your fate. This is a document that lays out your wishes so your medical team can decide what to do if you’re incapacitated or incapable of making a decision yourself (for example, if you were in a coma or in the later stages of dementia). It can include instructions to avoid certain procedures, your preference for where you’d like to go under certain scenarios, and even appoint a substitute decision-maker (typically a loved one) to make decisions about which treatments you’d be happy to accept. It’s a good idea to have an ACD on your medical record at any point of your life. (This great initiative by Advance Life Care helps you write your own.)
Ultimately though, every fate is the same. At some point, you die.
The doctor must be called to rule out any suspicious circumstances, confirm that death has occurred, then grant permission for an undertaker from the funeral home to move your body in preparations for your final farewell. Your death certificate is lodged with the government, your will is actioned via a lawyer or attorney, and your estate is divvied up according to your wishes. Done and dusted, assuming there are no issues with bank accounts, partnerships, passwords, taxes, etc.
Being passed through so many hands, it’s little wonder so many people find the end of a loved one’s life so stressful. Not only are you losing someone you care about—you, too, get lost in all the bureaucracy.
It all gets in the way of what truly matters.
Yvonne sips the last of her tea. She looks at the tea-soaked lemon slice, squelched in the bottom of the cup.
“Did I ever tell you about how my mother died?” she asks.
“No,” I say.
“My mother fled Hitler and spent the latter half of her life giving back to the country that had taken her in,” Yvonne explains. “She was very active with the Red Cross and Amnesty International, as well as the Women’s League for Peace and her local senior citizens club. She was remarkable.”
Yvonne pauses. “Well, anyway, she was diagnosed with breast cancer when she was 72, which had worsened considerably by the time she was 76. I took it unto myself to treat her. I cared for her at home as she received radiotherapy and underwent hormone treatment. I’d adjust her medications and morphine to match her level of pain. All this while an occupational therapist taught her techniques to help her breathe with broken ribs.”
“Mum had two good years after that,” Yvonne says. “And because we all knew what was coming, she did a rather delightful thing. She gave away little gifts and treasures to old friends and colleagues. And she phoned up her lifelong contacts to tell them she was dying, to thank them for their years of friendship, and to say a heartfelt goodbye. I’d quite like to do that too, I think.”
For many a “good death” is a foreign concept.
Yvonne pauses. “In the spring, she watched her garden and waited for it to bloom. And when the end came, I was with her and it was so peaceful. It was truly a good death.”
I smile.
For many a “good death” is a foreign concept. Within Yvonne’s circles, it’s the gold standard.
A good death is one as painless as possible.
A good death is one with friends and loved ones by your side and medical assistance within arm’s reach.
A good death is one where you are looked after in accordance to your values and wishes, seamlessly, as you’re moved from institution to institution.
But there’s another element to a good death, which I see as a common theme across all of Yvonne’s stories: a sense of closure.
Be it in a trumpet voluntary between a Jew and a German, a European trip, or a beautiful garden giving back all the goodness put into the world, a good death is one that resolves our overarching plot lines. For this is perhaps our greatest story—the story of our lives. And the more prepared we are, the more gracefully we may bring it to a satisfying close. A calm fall into a cosmic sleep.
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