[A]merican palliative care doctor and end-of-life activist Bruce (B.J.) Miller was in Hamilton Thursday to talk about Life Before Death.
The free event was part of Hamilton Health Sciences’ new twice-a-year speakers’ series called GreatBigIdeas.
Miller has made it his life’s mission to improve end-of-life experiences for people and their families after an accident in his early 20s left him close to death and a triple amputee.
The Spectator spoke with Miller before his presentation.
Q — Why do you say you have a formal relationship with death?
A — I’ve come close enough to acknowledge it and by acknowledging death, it begins a relationship. You begin to relate to “nothing lasts forever”…I can comment on what it’s like to lose because of my own injuries…We can’t control everything — I chose to keep that in mind as I traverse the day. It helps me live more fully and appreciate what I have while I still have it…Loss is hard. It also proves how precious life is in the first place, which encourages us to enjoy it while we have it.
Q — Why does the health system not serve the dying very well?
A — By choosing to wage war on disease, we end up feeling like losers when we’re not curable and when we die. It’s a shaming…The system does incredible work on cures. But it abandons the people who are no longer fixable. This adds an extra layer of sadness that is unnecessary.
A — How can we make dying a better experience for all of us?
Acknowledging it and pulling it out of the closet …normalizing it, I think that would help…Stop dividing medical issues from social issues…I worry about all the wisdom that languishes in nursing homes. I worry that no one listens.
Q — You say you don’t have to be dying to benefit from palliative care. What do you mean?
A — Everyone conflates palliative care with end of life…Palliative care is about timing in the face of illness and quality of life. It includes end of life but is not focused on it. Hospice is devoted to the end…Palliative care is not running away from death but not focusing on it either.
Q — How can someone live well when facing imminent death?
Well, that process begins before (facing death). If you crafted a world view that includes death, you won’t be surprised when your time comes. That way your persona can remain intact and you can stay whole to the end…even as your body crumbles. If you see death as an unnecessary force, you’ll find yourself at odds with yourself.
[W]hen I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.
To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.
I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.
At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.
At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.
That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.
In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.
In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.
It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.
When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.
That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.
Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.
Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.
NHS nurses offer advice on when to question doctors and how to deal with patients you don’t like
‘Good nurses are really tuned into their gut instinct and new nurses should learn to trust it.’
Don’t be afraid to question senior doctors
Never be scared to question a doctor, however senior they may be. We are our patients’ advocates and can protect them from potential mistakes. A good doctor will respect you for this. If you feel something isn’t right but are not confident enough to challenge a situation yourself, go to someone you know, trust and respect – watch how they deal with it and learn. Emma McLellan, staff nurse in the ICU, Manchester
Learn to trust your gut instinct
I believe good nurses are really tuned into their gut instinct and new nurses should learn to trust it. A nurse’s gut instinct is their deeply grounded knowledge base developed in practice, their critical awareness and what they have learned from previous situations plus an overall sense of knowing the patient well. You’ll just know something doesn’t add up, or you may convinced there’s something more going on, so make sure you go that extra mile to cover all bases. Maybe, for example, all of a patient’s baseline observations are normal, but you just sense that there is still that underlying thing you can’t put your finger on – monitor them really closely because you’ll often be right. Zoë Hartwright, community mental health nurse, Shropshire
Death is a part of nursing – talk about it with patients
Death is a regular part of nursing. Patients need someone to talk frankly about death. We plan births for nine months, but talking about death always seems awkward and hard. One of the best things you can do for a patient who is nearing the end of their life is to give them opportunities to talk about their death and how they would like it to be. Being able to give advice and support to help them get their affairs in order can relieve a lot of their pain and worry. It is possible to have a good death but the conversations have to be had.
When death is unexpected this is very hard to deal with. I worked in an accident and emergency department for 10 years and learned that life and death is unpredictable. I have seen many patients and nurses struggle with the last words that they said to that person, so I try to adopt the approach of being kind. Really think about what you say during emergency situations – it is likely that patient can hear you right to the end – even if the rest of their body is not responding. Use their name, talk calmly to them, explain everything you do as you are doing it. Speak to them as if they are awake. Christine Bushnell, advanced nurse practitioner, nurse partner in a GP surgery and trainer, Harrow
Be kind to patients’ relatives
It’s very hard not to take it personally when relatives are difficult with you. As a nurse in paediatrics, I found it tough at first as a newly qualified nurse without any children of my own. Now that I am older and I have my own children, it is different. When dealing with emotional or difficult relatives, try to put yourself in their position and understand that they do not have anything against you – they are just desperately worried about their child, for example, and you may be the nearest person to them and so they might take it out on you. It is important to listen without judging and, if treated with hostility, try to respond with kindness. Speak to your manager if certain behaviour from a family member is bothering you, but ultimately try to be understanding.
Don’t say, “I know how you feel” when you have never been in that situation. Instead you can say something like: “I can’t begin to imagine how worried you must be, but we are doing everything we can, if you have any questions please ask and if I can’t answer them I will find someone who can, etc”. Sally al-Habshi, paediatric emergency nurse, Leicester
Be nice to healthcare assistants
Always be nice to healthcare assistants, they’re amazing. Make lists of jobs you need to do – a good list helps everything. And always remember that when you’re having a bad day, your shift will come to an end and you can go home and eat pizza. Laura Thompson, ward manager, London
David Wynn, left, Edie Bennett, right, and Carolyn Lyon, center, are volunteers in the St. Joseph Hospital NODA program in Orange. No One Dies Alone is to provide a reassuring presence to patients who would otherwise be alone.
It is the in-between where hospital volunteers such as Edie Bennett and David Wynn make sure that no one dies alone.
Over nearly a decade of volunteering at St. Joseph Hospital of Orange, Bennett and Wynn have comforted people going gently into the night, endured sepsis many would run away from, even witnessed people crossing death’s door and suddenly reviving.
But perhaps there is nothing Bennett and Wynn say that is more comforting than hearing when someone is unresponsive humans connect on far deeper levels than you might expect.
It has to do with love. But sometimes it also has to do with jazz.
MOVEMENT OF LOVE
Family and friends gathering with someone near death is as old as humanity. But in the modern world, there is a raft of reasons dying patients face death alone.
Some have families too far away to arrive in time, some are homeless and without support, others are estranged from loved ones, some simply outlive everyone they know.
The No One Dies Alone movement traces its roots to a rainy Oregon night in 1986.
Sandra Clarke, a nurse at Sacred Heart Medical Center in Eugene, tended to an elderly dying man who asked, “Would you stay with me?’
Clarke was especially busy with six patients, according to reports, and promised she would soon be back. But by the time she returned, the man had passed on.
For years, the incident haunted Clarke. Eventually, she discussed with staff her idea of volunteers staying with dying patients. PeaceHealth, the corporate organization of Sacred Heart Medical Center, approved her vision and in 2001 No One Dies Alone was born.
Today, an estimated 200 hospitals are involved.
Wynn first thought about dying alone when he and his family happened to be in Las Vegas and a family member died while they were there. Later, he heard about No One Dies Alone through a hospital newsletter after being treated for a condition that nearly killed him. He recalled dark, sometimes scary nights when staff held his hand and comforted his worries away. “It was like I got hit on the head with a board.
“I don’t want to sound like ‘St. Dave,’ but I wanted to do something that made a difference.”
Busy with family, camping, skiing and a demanding job as an AT&T senior project manager, Wynn offered to volunteer. Soon, he was coaxed into coordinating the program.
That was nearly a decade ago.
DEEP CONNECTIONS
St. Joe’s, as the hospital is affectionately known, averages one dying alone incident a month. That may not sound like much, but keep in mind that death is unpredictable. Some people pass within a few hours, others linger for weeks — and some walk away.
Wynn recalls a woman dying one New Year’s Eve. On his way home from a ski trip with his wife, he agreed to answer the call thinking he would be home from the hospital before midnight.
But midnight stretched to 1 a.m., then 2 a.m., then 3 a.m. Dozing in a chair, Wynn woke to daylight and the woman sat bolt upright in bed asking, “Who are you?”
Wynn stammered he was simply there to keep her company.
Soon, the woman returned to her nursing home.
When a call goes out, an army of some 45 volunteers split into four-hour, round-the-clock shifts.
Wynn recalls his first patient, a woman in isolation dying of cancer. When he opened her door, the odor nearly knocked him over. He gathered himself, sat down, took a glove off and touched the woman’s arm to assure her that she was not alone.
“It’s not always pleasant. Sitting there for hours with a gown and mask on can be difficult,” Wynn, a 61-year-old Anaheim Hills resident, allows, “but every human being deserves to die with dignity.
“I think touch is very important.”
As Wynn talks, I think of my father holding my mother’s hand and caressing her arm just before Thanksgiving as she lay in a coma. As her heartbeat slowed, I too held her hand and gently kissed her forehead.
But I wondered whether we do these things to sooth our souls or for the souls of others.
Wynn is convinced communication — both sound and kinetic — goes back and forth regardless of the patient’s responsiveness.
“When I was non-responsive,” he says of his time as a patient, “I could still think, I was still aware.”
Volunteers talk, watch TV, listen to music with patients. “Each case,” Wynn explains, “takes on a life of their own. There’s a connection.”
Wynn learned one of his patients was a musician so Wynn played classical music. But the patient grew restless so Wynn turned off the music. Later, he learned the man was a jazz musician and Wynn played something off a 1959 Miles Davis album called “Kind of Blue.”
The patient’s lips crinkled into a slight smile.
‘SACRED ENCOUNTERS’
When Bennett learned her father was in the hospital in Arizona, the retired lobbyist drove eight straight hours. But she just missed being there when dad was still alive.
The event prompted the 68-year-old Orange resident to volunteer. “You’re sharing the last stage of life’s journey,” Bennett offers. “For me there’s no more sacred an encounter.”
Both Bennett and Wynn remember every patient as if it were yesterday. One was a 26-year-old woman with a long-term disease Bennett had met at St. Joe’s the year before. Back then, the woman had a tattered stuffed animal. Bennett brought a playmate, a furry toy.
“She was sipping from a straw,” Bennett recalls, “lime Jell-O. I stroked her hair. She could have been my daughter.”
Bennett looked at the young woman and promised, “You will always be my angel.”
“Thank you,” the young woman said before slipping away.
“I still think of her,” Bennett allows, “and that was almost two years ago.”
Then there was the time when Bennett was with a dying woman gasping for air. Her breathing slowed to six breaths a minute. Soon, it was so quiet it appeared she was about to take her final breath.
Suddenly, the patient muttered something. Bennett couldn’t make it out. Another sound, “water.”
Within an hour, the patient sang, “Water, water.” Then she ate chocolate pudding. Soon, she was discharged.
[O]n a recent night, I watched a man with terminal cancer die in the intensive care unit.
He was intubated. Meds ran through intravenous catheters in his bruised arms. Outside his room, alarms beeped. On the face of it, this death was precisely the kind we are told to avoid. But I think that for him, the I.C.U. was actually a good place to be.
My patient had thought he was healthy until a few months before, when the cough that wouldn’t go away turned out to be cancer in his lungs. Chemo slowed it down, but there would be no cure, his doctors told him. He was 75, and the cancer had spread to his lymph nodes and bones.
But he was living at home, eating the foods he liked, chatting with his wife. He went along that way until one day he spiked a fever and his cough worsened. The doctors in the emergency room sent him up to the I.C.U. And there we were, standing around the bed, as his breath grew ragged, wondering whether we could make him better.
Maybe with a few days of antibiotics, we could get him back home. Maybe. If we were to push ahead, with the hope that he would improve, he would need to be intubated. I turned to his wife.
She knew that he didn’t want to linger in a machine-enabled purgatory. But he would choose to undergo our interventions if there was a chance he could get well enough to return home, to be with her and the family, for whatever time he had remaining. We would take the chance.
I called the anesthesiologists. My patient’s wife held his hand as they sedated and paralyzed him so that they could place a breathing tube down his throat.
And with that, a man with a terminal illness ended up in the I.C.U., intubated, maybe dying. We know the numbers. More than 80 percent of people say they would prefer to die at home, and yet more than half of them die here in the hospital, surrounded by noise and strange smells and tubes and machines.
It’s a message that I continue to hear: Dying in an I.C.U. is a bad death that occurs when communication and understanding break down, while dying at home is a success. There is some truth to this. I have seen many men and women, bald and withered and suffering, tethered to machines that serve only to prolong an end that is inevitable.
But to cast an I.C.U. death as the negative outcome of poor communication and decision-making is too simple. Intensive care at the end of life is very often fluid, our treatments and decisions nuanced. Consider another patient, a frail man in his 80s, also with lung cancer, whose oncologist had told him he had maybe a month, at most. As his breathing grew more labored, he ended up in the I.C.U. We could not cure him — his doctors knew that, and he did, too. But perhaps we could help. We supported his breathing with high levels of oxygen, while we drained the fluid around his lung and gave him intravenous diuretics. We subjected him to the stress of the I.C.U. and a procedure, yes, but his breathing improved, not enough for him to go home again, but enough for him to be able to return to the general medical floor of the hospital. Some might argue that his story exemplifies what is wrong with our system, an example of an invasive, resource-intensive intervention in the last few weeks of life. And yet, seeing him sitting up in bed and able to take a deep breath, I considered his treatment a success — even if it bought him only days.
A procedure or an I.C.U. stay at the end of life can be a gamble. There are times when it ends the way we hope, with a treated infection, a return home. But there are times when it does not, and often, we do not know what is possible from the start. So we explain this uncertainty, and we continue to evaluate new treatment decisions with patients and their families in the context of their goals. And when the burden of disease grows too great, with further interventions more likely to cause harm than benefit, our focus can shift toward comfort. Navigating that shift is part of our training, too.
There my 75-year-old patient lay, intubated in the I.C.U. At first, the antibiotics seemed to be working, and he seemed to be getting a little bit better. We told his wife this, and she looked hopeful. But a few days passed, and then a week. He could not breathe without the ventilator. In a small conference room off the I.C.U., we told his wife that we were sorry. We had treated the pneumonia but because of the cancer, her husband’s lungs were too weak to recover. He was not going to get home. But we could maintain his dignity here, in the I.C.U., as he died. We promised her.
That night, we shut off the monitors inside his room. The screens went dark. My patient’s nurse increased the dose of his morphine drip. The respiratory therapist stepped in and removed the breathing tube. My patient breathed quickly for a moment, a little gasp, and then the morphine hit him and his breaths quieted.
We brought in his wife and two children, who gathered by the bedside. We slid shut the glass doors. From outside the room, I watched them stand there. I watched the monitors that remained on outside the room, holding my own breath as my patient’s heart rate slowed, then stilled completely. Inside his room it was quiet. There were no alarms. Through the curtains, I saw the shadow of my patient’s wife as she hunched over and began to cry, and her daughter leaned over to hold her.
And that was it. A man with metastatic cancer had died in the I.C.U.
Medical students do not learn how to talk about death. Junior doctors are forced to learn on the job – and that isn’t fair on patients or families
‘Death cafes aren’t a solution to lack of teaching, but all medical students should attend one.’
By Isabella Laws
[I]t is taboo in British culture to talk about death. We say someone has “passed away”, “kicked the bucket” or “left us” – anything to avoid even using the word. This has consequences. While 70% of people wish to die at home, half of us will actually die in hospital. Our reluctance to talk about death and make our wishes known is part of the reason for this.
So I didn’t expect to enjoy visiting a death cafe. As soon as I arrived, I knew I had made the right decision, however. The room hummed with a low level of chatter, and I felt prepared to practise talking about death and dying.
On that particular morning there were six of us in the cafe: two academic psychologists, a woman who had lost her husband in her early 30s, a grief counsellor and a man who had had a near-death experience. There was also a group leader, although the conversation was completely unstructured save for initial introductions – and the proviso that everything we discussed must be about death.
Death cafes were founded in the UK in 2011, inspired by a Swiss model, and the aim is simple: to increase awareness and openness about death with a view to helping people make the most of their (finite) lives. There are now more than 4,000 cafes held around the UK, Europe and north America.
After the death cafe, I couldn’t believe that I had spent two hours talking exclusively about dying. It was satisfying to talk to others who were honest about their experiences and fears. Nearly everyone regretted not speaking more frankly about it with their parents before they died. They also worried about raising the topic with their children: who should raise it? When is the right time? What if they shut the conversation down? One woman asked the group what kind of legacy we each wanted to leave behind. She worried that she had not been close to her family and they would not remember her in the way she wanted when she dies.
I was by far the youngest person there. This is unsurprising – people in their 20s don’t often think about death. I went because there is a fundamental lack of teaching at medical school to prepare you for the fact that this is something I will have to deal with every day as a doctor. In six years of study, I will have had just one small group session on “breaking bad news”. Yet as soon as I am qualified, I will be expected to talk about death and dying to patients and their loved ones on a daily basis. Last year, I saw a doctor only months out of medical school comfort a woman after her husband’s death. The same would be expected of me in just over a year’s time – and I was not ready.
In 2000, an average of 20 hours (pdf) were dedicated to palliative care teaching at medical school. I certainly haven’t experienced any increase on that figure, 17 years later.
I have witnessed good practice during my training, but there have also been times when I wished I wasn’t in the room. Last year, while sitting in on a neurology clinic, I watched as a patient was told they had motor neurone disease. Their face went blank and pale with shock, but the doctor seemed oblivious and launched into a monologue about the patient’s treatment options and prognosis. I sat in the corner of the room, powerless to intervene. Without teaching doctors effective communication skills as students, how can we be expected to fare any better?
A survey of junior doctors by the Royal College of Physicians of Edinburgh in 2013 found that only half felt prepared for communicating with dying patients and their families. This figure rose to 70% for their clinical trainers.
This lack of teaching lets down not just students, but patients too. A lack of guidance means junior doctors are forced to learn on the job. Undoubtedly, they will improve in time. The patients and families who experience unsatisfactory or even upsetting communication along the way are simply collateral damage.
Death cafes aren’t a solution to lack of teaching, but I think they make a good start. All medical students should attend one. It’s something all of us, without exception, will be affected by. Only through practising these skills can we hope to be effective and sensitive communicators when the time comes for us to break bad news.
[I] first met Stephanie in the Intensive Care Unit. She was an urgent admission — in shock, her blood pressure was almost unmeasurable. Over the previous month, the rate of cancerous fluid building up around her lungs had increased. She had used the permanent drainage tube in her chest wall more frequently to manage her shortness of breath. But in the process, she had made her blood pressure dangerously low. She was unconscious and mumbling incoherently. Her kidneys and liver weren’t getting enough blood and were effectively dying. We worked quickly. And we were lucky enough to be able to rehydrate her before her organs became permanently damaged. Slowly, she woke up again. We had saved her.
Stephanie was a 60-year-old wife, mother and grandmother. She loved life. Wine tastings, gardening, spending time with her family — this didn’t stop when she was diagnosed. When she had learned that the cancer had spread to the other lung and brain, she took a deep breath and went back into the ring to fight. She signed up for more chemotherapy. If she worked hard, she thought, she could beat it.
I wanted to celebrate with Stephanie and her family — she was no longer in critical condition — but I couldn’t. Our “fix” wasn’t going to change the fact that her cancer would continue to worsen. And fast. More chemotherapy would not save this woman. I had to tell her the truth.
When I walked into the room, Stephanie’s daughter Becky was giving her a massage. I thought of a manager preparing his boxer to return to the ring. “We’re ready to get back in there and fight,” Becky told me. “Bring on the chemotherapy.” Stephanie looked tired, but nodded. I took a deep breath and sat on the side of the bed.
I explained that it was only a matter of time before Stephanie’s organs failed again. The next time, she probably wouldn’t be so lucky. The corners of Stephanie’s mouth pointed down, like two arrows, and I wasn’t sure if she was getting ready to cry or yell. “Please leave,” Becky said.
I had done the right thing, but nonetheless I felt ashamed. I wasn’t the doctor they had been hoping for. I wasn’t their hero.
We all know we will die. But somehow none of us believes it. This is a serious obstacle to dying well.
To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.
Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.
We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture.
Two days later, I went upstairs to check on Stephanie and her family. I was no longer responsible for the case. Still, I worried that I had upset them, and I wanted to check in. I was dreading it.
But when I reached the room, there was Stephanie sitting in a wheelchair, smiling. She was going home that day. The family had had some time to absorb the news, and then they had changed the course of care. They had met with a hospice service. No more hospitals. No more chemotherapy.
Stephanie enjoyed the last two months of life with the support of hospice, her family and several bottles of good wine. Her funeral, which I attended, was replete with wonderful stories and not an ounce of regret. She died in my arms, Becky said, and it was as loving and peaceful a death as you could imagine.
Stephanie’s last couple of months might have looked very different. Like many of my patients, she could have died attached to machines. She could have been isolated from her family instead of in a cozy bed in the middle of the living room. And rather than the taste of wine and crackers, she could have had breathing and feeding tubes filling her mouth.
I’ve seen so many patients, so many lives, so many deaths. Far too few have the opportunity to live the life they would choose all the way through to the end. I believe deaths like Stephanie’s should be the rule, rather than the exception. And that is going to take some work from all of us — in the form of reflection, preparation and collaboration.
When it comes to death and dying, the answer is found in honest communication and human connection rather than technology and protocols. We’ve achieved amazing things in modern medicine. Our tools can serve to bring the dying back to life. But too often they take life away from the dying.
