How to plan for the death of a loved one

By Joel Theisen

The end of life doesn’t need to be filled with pain, frustration, guilt and clashing family dynamics.

My grandpa was dying of bone cancer, an especially gruesome way to go. He’d shriveled down to 85 pounds. The bathtub was one of the few things that brought him comfort.

So there we sat in his final days as he talked about his life and the things he cared about. He was riddled with pain, yet cracking jokes right and left. We spent hours laughing out loud. It was his way of telling me that he was at peace. And it was one of the most beautiful experiences I’ve had as a human being.

After 30 years as a nurse and chief executive of a senior care company that has served over a million lives in the community and within senior housing, I’ve experienced more than my share of death. I learned that the end of life needn’t be filled with pain and frustration, with guilt and clashing family dynamics. It can be a time to cherish the spark in a loved one’s eye, their spirit and wisdom. And that we can help them die in the most positive way possible.

Your wishes codified

I’ve seen it often through the years. A terminal illness arrives. The dying person’s last wishes aren’t in place. Now tough decisions need to be made in a moment of crisis. Everyone in the family has their own opinion, freighted by our cultural fear of death. I’ve seen it get ugly, with families torn apart. Our loved one doesn’t get the death she wants.

I’ve also seen the opposite, when death is peaceful and lovely. The difference is usually a POLST–portable medical orders — an end of life plan conceived with your doctor that travels with you from hospital to nursing home, or wherever your journey takes you. The idea is to outline your wishes before crisis hits, rather than leaving it to group decisions in times of trauma.

You can take a curative route, signifying your willingness to undergo any treatment as long as there’s a shot. You can take a palliative path, which focuses more on bringing relief and comfort to your final days. Or you can choose a mixture of both, dictating whether you want such things as a feeding tube, a ventilator, or to even be taken to a hospital at all.

The POLST informs family and facilities of exactly what you want. When those final days arrive and family gathers at bedside, there’s no need to speculate on medical choices. Everything that’s important is already in place.

Hospice

Chances are that a loved one with a terminal condition is already eligible for hospice care, offered free to Medicare recipients who’ve been certified by a doctor as having six or less months to live. The program was conceived by the federal government after realizing that people were spending most of their money during the last two years of life. Their savings were being drained by extraordinary measures that didn’t really help, rather than concentrating on the supportive care they truly needed.

Instead of sending you to a hospital, hospice comes to you, be it your home of 40 years, or your apartment in an assisted living facility, or even a relative’s house. It’s all about comfort. You’ll be cared for by experts in death and dying whose mission is to provide the least restrictive experience possible.

Nurses, aides, and physicians work within your plan. They can bring you a hospital bed to help you sleep or equipment to help you breathe. There’s spiritual care, music therapy, visiting aides, volunteers, and bereavement coverage for family. There’s also a pain management plan, with the goal of making the end of life as serene as possible.

The most peaceful deaths I’ve seen are when people die in their own homes on their own terms. The Medicare hospice program helps make that happen, especially when it’s used sooner than the final days of life.

This doesn’t mean you can’t turn back. We’re humans. We get scared. You can leave hospice whenever you want for one last shot with chemo and radiation. The larger point is that you and your family are educated early, preparing emotionally, mentally, and spiritually. And that someone will be with you the entire journey, holding mom’s hand — or your hand if that’s what you need — to help you make the most of those final days.

I know about trauma. My sister died in a car crash at age 43, leaving behind two kids. It was a horrific experience, but we’ve chosen to make the most of it.

Every year we take a family vacation. And every year we set aside time to celebrate my sister. We talk about our feelings and frustrations, our love and loss. It’s not always a glorious celebration. But it’s helpful.

Circumstances didn’t allow us to prepare for her death. So we’re trying to make the most of it in retrospect.

Like it or not, no one on this planet is getting out alive. Though our finish line may be the same, the ways we get there — and the methods we choose to deal with the aftermath — are often up to us. A solid plan for the final stages will help both us and our survivors. Start talking now with your loved ones. The more we do, the less we fear the inevitable. What you discover may provide the means for not just an end, but a magnificent one.

Complete Article HERE!

I have terminal cancer.

A houseplant is helping me confront mortality.

David Meyers has placed his lucky bamboo in a living room window. He has found comfort in caring for the plant since his brain cancer diagnosis.

Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver

by David Meyers

My wife and I usually don’t keep houseplants. Anything in pots gets either overwatered or underwatered. After my diagnosis with glioblastoma — a terminal brain cancer with a prognosis of little more than a year to live — I loved the idea of having something new and green and alive around us.

When my friend Mitch gave me a lucky bamboo plant in a deep-green pottery bowl with three pencil-size stalks braided together, we decided to place the plant in the living room window across from the couch where I spent much of each day.

I smiled when I looked over the rim of the mug of coffee Hannah brought me each morning.

I told Hannah I wanted to care for the plant myself. When it didn’t immediately turn yellow or brown or lose all of its leaves, I was pleasantly surprised.

Tending to the plant gave me a sense of accomplishment at a time when I sometimes felt useless. Glioblastoma limited my ability to walk, and the treatment left me fatigued, making it hard for me to accomplish everyday tasks.

Being dependable again

As a physician, I was used to being the one who provided care, not the one who received it. Since my diagnosis in August 2018, far too often, it seemed, I had to rely on help from other people. The enormous change left me feeling adrift and unsettled. Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver. Plants and people could still depend on me.

Over the next few months, I recovered from surgery and completed radiation and the first round of chemotherapy. Even after I returned to work, I continued to care for the plant. Soon, it had nearly doubled in height and its leaves were shiny and lush. Both the tree and I were thriving.

Then, mysteriously, it began to show signs of stress. I increased my watering, then decreased it. I nestled coffee grounds into the soil. I fed it commercial plant food. No matter what I did, the leaves kept browning and dropping to the floor. I grew more and more frustrated and uneasy.

“I can’t even care for a simple plant!” I yelled. “I’m failing!”

Hannah reminded me that we’d seen houseplants die before. She asked me why I was getting so worked up about this particular one.

“If my lucky bamboo dies,” I blurted out, “I might die, too!”<

I couldn’t shake the feeling that the plant had become a symbol of my own precarious health.

Solace and control

Identifying with the green and growing plant had offered me solace. Now that the tree was struggling, I felt increasingly fearful. Its shriveling leaves, I worried, might signal the recurrence of my brain tumor.

I realized I had wrongly connected my careful nurturing of the plant — something over which I had at least some control — with my own survival — something over which I had no control.

When my tumor inevitably returned, it would not be because of any failure on my part — not because I didn’t atomize essential oils in my office, not because I ate sugar occasionally and certainly not because I failed to keep this plant alive.

As my anxiety lessened, I began to pore over online tutorials to help me figure out how to care for my bamboo. Following the instructions, I transplanted the tree to a larger pot, untangling its roots to give it room to grow. When it was back in the sunny window, we both began to thrive again.

Whenever I look at the tree with its braided stalks in its new pot, I make a point to think of Mitch and the other people who have cared for and supported me. If the lucky bamboo outlives me, I hope it will comfort Hannah and remind her that our large community will continue to nurture her after I am gone.

Complete Article HERE!

Three things I have learned about end-of-life care from treating elderly couples with cancer

Experience provides fortitude, equanimity and perspective. Not everyone wants to live forever

‘The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient.’

by

“We are happy and sad to see you again. You looked after Dad years ago.”

I kick myself for not registering the connection, although I only met him during a brief and disastrous stint in hospital.

The complications of cancer treatment had kept mounting until his wife was forced to admit her 85-year-old husband to hospital despite his protestations. His memory had faded and his moods turned volatile. He died in hospital, captious and discontent. I now recall the exhaustion of the family and their guilt-ridden attempts to reconcile with his end.

Some of my work involves seeing cancer patients in their 80s and 90s. The mission of a “geriatric oncology” service is to treat the cancer in the context of the whole patient; while it can be said that all cancer care ought to share this mission, elderly patients are a particularly vulnerable group, with little margin for misadventure. Since two in five people will receive a cancer diagnosis by the age of 85, there have been several occasions when I have treated both husband and wife.

Here are three things that I have learnt from looking after my most elderly patients.

1. Their goals differ

While younger patients compare their treatment to what someone else is having or bring in an overseas recommendation, and (understandably) want to leave no stone unturned, even at the cost of significant toxicity, my oldest patients often have a different goal – to preserve quality of life and maintain independence, even at the cost of survival.

This is especially true when a person is both patient and caregiver.

Co-dependant elders can get by happily in their own home but the moment one stumbles, both are in jeopardy. I frequently meet people who base decisions on combined harm rather than individual good. Interestingly, the people who sometimes struggle to comprehend this are their doctors who are taught to focus on cure.

Many patients who have accompanied a spouse through cancer and end-of-life care have used the opportunity to reflect on their own choices.

I met an octogenarian who declined chemotherapy after caring for his wife who endured recurrent hospitalisation before dying. The same day an elderly woman insisted she would rather “die on the table” than live a life of regrets, as her husband did after he rejected surgery.

One of my most memorable patients was a 90-year-old man who refused an operation because the resulting diarrhoea would involve him negotiating a steep staircase to use the bathroom more frequently. Given the choice of moving out of his beloved home and living longer, he didn’t think twice. I have seldom seen a happier man exit the hospital without a cure.

I also meet overwhelmed patients who relinquish decisions to professionals but, when given the chance (more on this later), most patients will explicitly state what matters to them and make concordant decisions. A long life, necessarily including experiences of sadness and mortality but also inspiration and hope, has given them fortitude, equanimity and perspective. Not everyone wants to live forever, especially if the life is messy.

2. It’s hard on the children

Elderly patients have middle-aged children in the prime of their careers or out of the workforce for important reasons. Apart from tackling a mortgage, navigating workplace tensions and looking after themselves, they are juggling dependent children and vulnerable parents. They are carers, cooks, interpreters and drivers. In a multicultural community the “blessings and curses of filial piety” are on full display, and I worry that I am rarely useful.

Often, there is sibling conflict, usually because one sibling is doing “all the work”. Then there are the expectations of the carer that are hard to meet.

Can I see their parent on their day off? No, the system is inflexible. Can I organise transport? No, there is no funding. Can I avoid issuing last-minute appointments? No, it’s out of my control. Can I expedite aged care services? No, they must join the queue.

I wish the system understood the toll that illness exacts on the whole family.

One of the hardest things is to witness children seeing one parent succumb to cancer, only to repeat the experience. The despair of anticipatory loss is palpable but, if there is one glimmer of hope, it is the benefit of hindsight.

Families who insisted on intensive care at the end of life acknowledge its futility, those who doubted palliative care recall its worth. There is irony in the hope that the next time will be “better”.

3. We must do better

When illness is regarded as an anomaly, the emphasis is on fixing the problem, averting loss and restoring normality.

Every patient deserves optimal care but, when the conversation begins and ends with response rates and survival curves, it is a missed opportunity to respect the whole person, honour their wisdom, longevity and contribution to society and let them contemplate a twilight that contains dignity and comfort.

The power imbalance between doctors and elderly patients is especially pronounced.

I find it confronting to hear these patients lament that they are undertaking onerous surgery or toxic chemotherapy because they don’t have a choice. Some are confounded to learn that they always have a choice, even if doctor and patient agree to disagree. For many people of their generation, advocating for their right to be heard is unthinkable. For those who come from culturally and linguistically diverse backgrounds, this feels impossible.

No doctor who recommends an intervention in good faith wants to hear that a patient feels coerced, so we must choose language that opens the door to shared decision-making and correct the dismal lack of research on the needs of elderly patients. It is an indictment of medicine if the patient who really wants to say no ends up saying yes.

My elderly patient decides against treatment but requests periodic consultation to allow her to change her mind. All things considered, she says her work on Earth is done and she greatly misses her husband. At this, the daughter sheds a tear, but I can already see that this deliberate decision-making is better than what went before.

We won’t cure the patient but we will have honoured the person. A victory for the patient is a victory for medicine.

Complete Article HERE!

Many of Oldest Old Say They’re at Peace With Dying

Study finds most people over 95 are simply grateful for every day

People well into their 90s are often willing to talk about death, but they’re rarely asked about it, a new British study finds.

“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” said study leader Jane Fleming. “We know very little, too, about the difficult decisions concerning their end-of-life care.”

Fleming is with the University of Cambridge’s public health and primary care department.

The researchers interviewed several dozen people over 95 years old — or their relatives or caregivers if they were too frail — about their attitudes on death and end-of-life care.

According to the study, published April 5 in PLOS ONE, most had outlived their peers. Many felt they were living on “borrowed time.” They also felt grateful for each passing day, and didn’t worry too much about the future.

“It is only day-from-day when you get to 97,” said one participant.

The researchers noted that most of the older people interviewed felt prepared to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.”

In some cases, the participants felt as if they had become a burden on others or were anxious to finally reach the end of their long lives.

Many were more concerned about how they died than when. They hoped they would “slip away quietly” in their sleep and that their death would be painless. “I’d be quite happy if I went suddenly like that,” said one.

Few participants said they would want to be hospitalized if they became sick.

When asked if they would prefer lifesaving medical care or treatment to help them remain comfortable, most opted for comfort. Most were also not afraid of dying. For some, witnessing the peaceful death of others helped them manage their fears.

One woman recalled her parents’ deaths, saying, “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”

Funeral planning among the very old is more common than open discussions about death, the researchers found. Some had even made arrangements for themselves in advance.

“Death is clearly a part of life for people who have lived to such an old age, so the older people we interviewed were usually willing to discuss dying, a topic often avoided,” Fleming said in a university news release. To best support men and women dying at increasingly older ages, she said, “we need to understand their priorities as they near the end of life.”

Most participants had had end-of-life discussions with their doctor. But, rarely did these conversations take place among family members, said Fleming and her co-author Morag Farquhar, a senior research associate in the public health and primary care department at Cambridge.

“Having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard,” Farquhar said in the news release.

Complete Article HERE!

The pandemic changed what it means to have a ‘good death’

By

When considering what a “good death” is, most people in North America would likely say something along the lines of living to at least 75, and painlessly passing away at home in their sleep would constitute a good life and, most importantly, a good death. One of the key features of the “good death” narrative is being at home.

So, what do we mean by home and how important is the idea or feeling of “being at home” to a good death?

Home is more than just a structure. It is textures, smells, sounds and atmosphere. It is a sticky table that brings you back to your first day of school when you held your brother’s hand as you both walked to the bus or a smell that reminds you of the first time you baked cookies with your grandmother and danced around the kitchen singing along to Cher.

Home is nothing, but everything, especially at the end of life.

Death used to be treated as a public event, but as our society has become more individualistic, it has shifted to being a matter best dealt with in private by ritual specialists — like an embalmer or funeral director — and close family members.

As the home is thought of as being the most intimate private space we inhabit, it should not be surprising that most people wish to seek “home” in the dying process. To die outside of home is seen to be a failure — a bad death.

The pandemic changed the lives of many people. Isolated from friends and family, away from home, many people didn’t have access to a “good death” — especially those in care homes. So its important to reflect back on this idea of a “good death” and how we understand what home and family mean.

No longer an ‘uncomplicated’ death

Since the 1920s and ‘30s the government has increased its control over funerals and end-of-life treatments. This became an even greater concern in the 1950s and ’60s, when advancements in medical care meant that people who would have previously had an “uncomplicated” death now found themselves entangled in, and dependant on medicine.

With an aging population and medical advancements, the reality is that as people age, they are likely to find themselves being put in the role of “patient,” where their death will be medically mediated.

This means that even if they are able to be at home, their health is being medically determined, with the end result being that the amount of control they have over their own lives and final care has become complicated.

The ideal narrative of living to 75 and passing away at home quietly and painlessly while asleep is becoming increasingly difficult to realize.

A person stands behind square windows, wearing scrubs, wiping down a desk
A worker is seen cleaning surfaces inside a long term care home in Vancouver.

No longer at home

The fear of not having a “good death,” by dying at home among family members, has become a very real concern — especially during the pandemic.

Before COVID-19, people who lived in places like care homes would still be invited to gatherings or enjoy the occasional visit from a loved one. Their social death was isolating, but not devastating.

During peak restrictions, senior living and care facilities were locked down. This resulted in family members feeling helpless and those living in care facilities feeling hopeless.

The shutdowns, intended to keep them safe, caused many to long for a home that wasn’t restricted — some even opted to choose medically assisted death in the face of additional lockdowns.

An evolving ‘good death’

In the Netherlands, home is thought of as not just being a physical space, but is seen as a state of being in the family.

Isolated from their families during the pandemic, many individuals found themselves no longer being in the family. The social death they were experiencing was felt to be far more painful than any fear or concern they had about their own biological death.

As we reflect on what life means to us in this post-pandemic shuffle, we need to also contemplate what a “good death” is. For some, that may mean opting for quality of life and control over how, when, with whom and where it ends through end-of-life programs like MAID (Medical Assistance in Dying).

The pandemic will forever change how people understand what home and family means, what their role within the family and home is, and how to be in the family and in the home, in whatever form that may be, for their passing.

Complete Article HERE!

‘A Last Act of Intimate Kindness’

I had barely seen my brother in decades, but when time was short, he let me in.

By Michelle Friedman

The message I had dreaded for years appeared on my phone: “Looking to find the sister of my patient, Jay Friedman.”

My ensuing phone conversation with the doctor brought ominous news. My 65-year-old brother, Jay, had advanced pancreatic cancer. He and I grew up together in Divine Corners, N.Y., a hamlet in the Catskills, raised by secular Holocaust survivor parents who stumbled into raising chickens. Their histories, coupled with the isolation and poverty of the farm, rendered my father brutal, especially to his only son.

I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. Despite working a quarter century in I.T. for the local school system, my brother did not own a cellphone. His doctor found my number via Google.

Jay was admitted to a fancy Seattle hospital where I called him via the landline next to his bed. His voice sounded weak, plaintive.

“Jay, I’ll come,” I said. “Let me be with you.”

“I don’t know,” he said. “My house is a mess.”

“I can stay in a hotel.”

“I’ll let you know.”

I panicked. I knew the prognosis was dire, but my brother’s lonely life cast an even darker shadow.

The hospital discharged Jay with a bag hanging from his chest to drain bile from his tumor-blocked liver. A few days later the doctor called again. Jay wanted my help.

I caught a flight to Seattle, picked up a rental car and drove around Puget Sound to a town in Kitsap County. Before entering Jay’s house, I muttered an ad hoc prayer for strength. Following the sounds of his weak voice through the maze of papers, boxes and computer parts, I found my brother lying on the couch. The disease had consumed him, leaving his body whittled, skeletal. Only Jay’s voice sounded familiar, a gravelly baritone.

“Thank you for coming,” he said. “I’m sorry I was snappy over the phone.”

The blanket wrapping my brother was full of holes. A brown crust covered his kitchen floor and counters. Jay drank tea with lemon in the one glass he possessed. Not owning a kettle, he boiled water in an old pot.

I brewed tea and baked a piece of chicken. After a few sips of liquid and child-size bites of food, Jay felt full. He slowly climbed the stairs to the single bed in his bedroom. The sheets hadn’t been changed in months. All I found in the closet was a cotton duvet cover that I recognized from the farm where we grew up. The faint smell of the detergent and crisp lines from our mother’s iron told me Jay had never used it.

Retreating to a Best Western hotel two miles away gave me guilty relief. It was no palace, but it was clean and orderly.

In the morning, the doctor outlined my brother’s stark medical options. Surgery was out. Jay could pursue radiation or chemotherapy, but neither was likely to yield much in terms of quantity or quality of life.

Jay made his choice in seconds — no aggressive medical intervention. The focus shifted to palliative care at home.

He didn’t have much time, weeks. How was I to start a conversation with him about his death? I knew he took pride in his money management and had saved a lot (though I had no idea then how surprisingly much), so that’s where I started.

“Jay, have you thought about what you want to do with your money?”

“Yes, I’ve thought about this a lot. I want to give it to Planned Parenthood.”

“All of it?”

“Yes.”

His calm answer startled and pleased me. Throughout our decades of sparse contact, Jay stayed vague when it came to his personal opinions.

“Jay, that’s amazing! How did you come to this decision?”

“There are too many people in the world, and I believe that people should have autonomy over their own bodies.”

I sat in silence thinking about my brother’s autonomy, the little boy overwhelmed by our rageful father, the awkward teenager who wanted to join the Navy to get away but lacked nerve. My practical mind kicked in. “Jay, do you know a lawyer?”

Once again, he surprised me. “Yeah. One of the teachers I know went to law school at night. He’s a good guy.”

Jay had no contact information for the lawyer, but I found him through the school. He answered my text within minutes and got to work preparing the necessary papers.

By the next day, Jay could no longer crawl up and down the stairs and spent most of his time in his bedroom. We moved the mattress to the floor in case he rolled off during the night. I pleaded with hospice to fast-track Jay onto their service, and soon a nurse arrived and taught me how to dose the medication: morphine for pain, Haldol for nausea and Lorazepam for anxiety. Each floated in a medicine-dropper-topped bottle so that liquid relief could be applied to the inside of the patient’s cheek.

Jay’s condition deteriorated quickly, and I no longer retreated to the Best Western. My first night in Jay’s house, I slept downstairs on the sofa. The next night, I worried that I wouldn’t hear his whimpers, so I moved to the floor next to his mattress. My younger brother’s vulnerability pierced me; he was the innocent little boy on the farm who trusted me. I cried, silently.

When he no longer ate or drank, I repurposed a medicine dropper to drip orange juice and seltzer onto his parched lips.

The lawyer met privately with Jay and later told me of his firm wish to be cremated.

A clutch grabbed my heart. Jewish law, which I follow, prohibits cremation. “Can I at least get Jay’s ashes so that I can bury them according to our faith?”

“Yes. I think that will be OK.”

“We haven’t talked about this, but I’m wondering if you are part of a religious tradition?”

“I am. The Church of Jesus Christ of Latter-day Saints.”

His answer bolstered me, given what I was about to request.

“Can I ask you one more favor?”

“Sure.”

“When the time comes, I want to do a Jewish ritual washing for Jay. It’s called a tahara. It means purification. I’ll need help; it’s too hard to do alone.”

“Of course. Call me when you need me.”

The days passed in a kind of waking dream. Jay talked on and off, disclosing struggles of all kinds. He liked hearing stories about Divine Corners, how we played in the snow and explored the brook behind the coops. I emptied his drainage bag and changed his adult diapers.

“This is disgusting,” he said.

“I’m fine,” I said. “I’m here for you. There’s nothing else I want to do.”

As our mother did when we had fevers as children, I gave Jay a sponge bath and changed his worn pajamas to a clean set.

Jay quietly slipped away. He told me that his dream was to buy a house on a lake with a few acres of land.

“That’s such a nice idea, Jay,” I said. “I love you.”

“I love you too.”

And then I made a plea I knew people have uttered for millenniums. “Send me a sign, Jay. Please send me a sign from the other side.”

Early Thursday morning I woke up inches from my brother to find him gone. No labored breathing, no death rattle. His skin had cooled, his limbs stiffened.

When the sky was fully lit, I called his friend, and we performed the tahara. We removed Jay’s pajamas, removed the drain and bag, all the while using a clean sheet to keep his frame covered and dignified. I repurposed the battered teapot to pour water over his body, starting with his head and moving to his feet. We toweled him dry, dressed him in long underwear and wrapped him in the duvet cover from our childhood farm. The work felt tender, holy, a last act of intimate kindness.

The mortuary people came and removed Jay’s body. At 6 o’clock I boarded the van for the airport. Only one other person got on, a white-haired woman in a sweater set. I saw that she bid a sorrowful farewell to the man seeing her off. She sat a few rows behind me. Drizzle and traffic caused delays, but our elfin driver navigated the trip and asked us which terminals we needed.

“American,” she said, turning mournfully in my direction. “It’s a sad trip. My brother is dying of brain cancer in Florida.”

“United,” I said, and to her: “I just left after taking care of my brother, who died this morning. I hope you get there in time.”

We reached across the aisle and held hands. Jay had made good on his sign.

Complete Article HERE!

Ask Me About Death and Dying

— On the Work of Palliative Care

Anna DeForest Wrestles With the Calculus of Whether a Life Is Worth Living

By Anna DeForestIt has never been obvious to me that life is worth living. Throughout my medical training, where we have ample exposure to the tools of psychiatry, the taxonomy, I have considered that this disposition may be an illness, a disorder of mood or personality, or a maladaptation secondary to the traumas of my upbringing. But try as I might I cannot seem to be otherwise.

For almost a decade now my life has been in medical training, which is schooling that is also labor, for five years paid but the first four I paid for, and part of what they train us to do at these elite institutions is to be leaders in whatever fields we go into. We are made to practice giving academic talks, and whenever it is my turn, almost without meaning to I start talking about Rene Descartes, about thinking in relationship to being, about how wrong he was and how fucked up the world got, or I’ll talk about neuroscience and free will and confabulation, and I wonder if people with psychiatric illness feel the way I feel when I give these talks, the comforting grip of an ultimately ineffable concern.

The title of the training I have just wrapped up is Hospice and Palliative Medicine. Hospice means a roadside inn for pilgrims and indigent travelers. Palliative means more concerned with the experience than the reason it happened to occur. It is very important to the people who advocate for the field of palliative medicine, for its funding, legitimacy and worldwide integration into medical practice, that we always stress at every public opportunity that palliative care is for the living. Of course we are all of us dying, but their concern is worth a note. Because doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.

On the spectrum of death, unless you are to die instantly, in your sleep, say, or as my father did recently, in a chair in front of the television, so suddenly you do not even have time to rise, to try to get to a phone, so shocking and abrupt it can hardly register for you, the participant, the decedent, as having any quality, a good death requires a little bit of time—to rest, to reflect, to say the four things they say it helps to say: I am sorry, I forgive you, and the other two I forget. Hospice, though etymologically a place, is in modern usage a philosophy of care you can receive in your home or a nursing home or a hospital or anywhere, a team of nurses, doctors, social workers, chaplains and others who help you navigate the process of becoming dead.

Once on hospice, you stop receiving treatments that slow down the dying process and your care is focused on medications, practices and routines that can make your experience at the end of life less unpleasant. Palliative care, distinct from hospice, is a broader concern for anyone in a body enduring illness, a team performing symptom-focused assessments on anyone whose health is at times at odds with their quality of life.

Doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.The first person I ever saw die, and the second, and the third, were people in late age, their seventies or eighties, who died of cardiac arrests in the hospital. It goes like this: A call goes out overhead and a team comes at a run through the halls of the hospital, to where whoever found the patient pulseless is already over them, performing chest compressions. The body is stripped, legs and arms each a separate place, a project, someone placing a new line or stabbing for an arterial blood gas. The air fills with a tension you could tell yourself is excitement, although in tenor it is more like watching someone being arrested, surrounded, attacked. Every action argues for itself, right on the line of brutality.

Even before I saw all this, I often feared my heart would stop, mostly when it was night and I could not sleep. I would listen to my heart beat and beat, willing another, on and on and on. One of the unit physicians, when he learned I was not even enrolled yet, still in my first line of work, adjuncting in an English department, begged me to stay where I was. This job, he said, it eats your whole life, it is terrible. I can only guess what he meant, that his hours were long and his life and work not clearly delineated, that whatever he had imagined that his life would be like here, he had been wrong. The patients with heart failure were unfixable, noncompliant, always coming back.

Years later, I had finished medical school and was resident, training as a specialist in disorders of the brain. The patient was well-appearing, able-bodied, mid-fifties, a construction worker presenting with a few weeks of dizziness. An MRI showed small bright lesions all over his brain, a shower of metastasis. The word innumerable is never one you want to hear from a doctor. A pan CT showed the likely source of the mets, a large chest mass concerning for lung cancer. He had no idea, no other symptoms, just a little lightness in the head.

What does this mean, he asked, and his doctor, the attending physician who was my boss, told him he would have to wait, to see a number of specialists: the interventional radiologist, who would biopsy the lung mass; the medical oncologist, who would match the tissue sample to a course of chemotherapy; the surgeon, who would tell him his tumors are inoperable; the radiation oncologist, who would blitz his brain and chest with radiation.

He waited for days in bed as we coordinated the other doctors. The teams came and went, each saying its piece, in long speeches of words that made sense one by one but kept not adding up to anything. I had been taught not to tell him much, and it was true, we wouldn’t know the whole picture until after the biopsy, until the tissue was sent for tumor markers, and the treatment course sketched out. What I wonder, he said to me one afternoon when I was at the bedside, is why no one will just tell me that this is really bad.

One reason he never quit smoking was he was afraid of gaining weight. He didn’t want to get diabetes, which is the disease that killed his father around his same age. On the bloodwork we sent before his scans came back we found out that he had diabetes anyway. When I told him this, he laughed, and we shared the cannoli his wife brought in from their favorite Italian bakery. It is bad, I told him. It is really bad. He died, he did, a few months later.

As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without.There is a stance that appears most in medical-school application essays that the purpose of medicine is to relieve human suffering, but it is truer to say, in Western medicine, that the goal is the prolongation of life. Nothing wrong with that, on its face, in some cases, though it may be reasonable to wonder, since everyone dies, what is the cumulative effect on medical practitioners, our hearts and heads, that we miss our goal in every case; a failure rate of one hundred percent.

But for you, for now, you have high blood pressure, high cholesterol, so take this pill to bring it down so that it doesn’t give you a stroke or kill you. If the cost is low and the benefit is high, the choice is clear, but in chronic illness and in life-limiting illness we find a need to add a little background math: this treatment, say it is whole-brain radiation, will prolong your life, and the cost of that prolongation is, say, aging your brain by forty years. This treatment, a percutaneous endogastric tube, will prolong your life but you will never be able to eat food by mouth again. As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without. And this is the work that palliative care is about.

What is it, exactly, that you want me to do? The woman who was asking had metastatic cancer in her abdomen. Yesterday we told her that she had no options  left for treatment. With her permission we shared a prognosis of weeks to a few months. Her face didn’t move as the news broke. She looked off to the left at the wall. And someone gave the speech on the philosophy of hospice, and she shared a hope to go home. It is the next day, with the logistics all already in process, that she asks.

What am I supposed to say now, what am I supposed to be thinking about? I can’t tell you how everyone I meet feels about the things we tell them, though young in this work I have seen a few trends. And something I see a lot is people who feel that their lives got away from them, they were always just watching, as from the station looking at faces flicking by on a moving train, and what is left to them now in the time they have left is only fear and suffering of unclear significance. What do I do with a thing like that? I hear it, and I help where I can.

What I am always saying in my Descartes speech is that we are not what we think, but we become what we are doing. I am worried about what this means for the doctors. Whenever I am lost, I try to stop moving, in case I am running off again in the wrong direction. It is never too soon to sit down and map out our values, to consider if we want to end up in the place where we are going. No, not yet, we aren’t there yet, says the oncologist. This is just a bump in the road.

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A History of Present Illness by Anna DeForest is available now via Little, Brown.

Complete Article HERE!