Tag: End of Life Care

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What Our Cells Teach Us About a ‘Natural’ Death

Effigies in Scotland from the 17th century, when death was simpler.

By Haider Javed Warraich

[E]very Thursday morning on the heart transplant service, our medical team would get a front-row seat to witness an epic battle raging under a microscope. Tiny pieces of heart tissue taken from patients with newly transplanted hearts would be broadcast onto a gigantic screen, showing static images of pink heart cells being attacked by varying amounts of blue immune cells. The more blue cells there were, the more voraciously they were chomping away the pink cells, the more evidence that the patient’s inherently xenophobic immune system was rejecting the foreign, transplanted heart.

There was so much beauty to be found in the infinitesimal push and pull between life and death those slides depicted that I would fantasize about having them framed and put up in my house. Yet the more I studied those cells, the more I realized that they might have the answers to one of the most difficult subjects of our time.

Throughout our history, particularly recently, the human race has looked far and wide to answer a complex question — what is a good death? With so many life-sustaining technologies now able to keep us alive almost indefinitely, many believe that a “natural” death is a good one. With technology now invading almost every aspect of our lives, the desire for a natural death experience mirrors trends noted in how we wish to experience birth, travel and food these days.

When we picture a natural death, we conjure a man or woman lying in bed at home surrounded by loved ones. Taking one’s last breath in one’s own bed, a sight ubiquitous in literature, was the modus operandi for death in ancient times. In the book “Western Attitudes Toward Death,” Philippe Ariès wrote that the deathbed scene was “organized by the dying person himself, who presided over it and knew its protocol” and that it was a public ceremony at which “it was essential that parents, friends and neighbors be present.” While such resplendent representations of death continue to be pervasive in both modern literature and pop culture, they are mostly fiction at best.

This vision of a natural death, however, is limited since it represents how we used to die before the development of modern resuscitative technologies and is merely a reflection of the social and scientific context of the time that death took place in. The desire for “natural” in almost every aspect of modern life represents a revolt against technology — when people say they want a natural death, they are alluding to the end’s being as technology-free as possible. Physicians too use this vocabulary, and frequently when they want to intimate to a family that more medical treatment may be futile, they encourage families to “let nature take its course.”

Yet, defining death by how medically involved it is might be shortsighted. The reason there are no life-sustaining devices in our romantic musings of death is that there just weren’t any available. Furthermore, our narratives of medical technology are derived largely from the outcomes they achieve. When death is unexpectedly averted through the use of drugs, devices or procedures, technology is considered miraculous; when death occurs regardless, its application is considered undignified. Therefore, defining a natural death is important because it forms the basis of what most people will thus consider a good death.

Perhaps we need to observe something even more elemental to understand what death is like when it is stripped bare of social context. Perhaps the answer to what can be considered a truly natural death can be found in the very cells that form the building blocks of all living things, humans included.

Though we have known for more than a century how cells are created, it is only recently that we have discovered how they die. Cells die via three main mechanisms. The ugliest and least elegant form of cell death is necrosis, in which because of either a lack of food or some other toxic injury, cells burst open, releasing their contents into the serums. Necrosis, which occurs in a transplanted heart undergoing rejection, causes a very powerful activation of the body’s immune system. Necrosis, then, is the cellular version of a “bad death.”

The second form of cell death is autophagy, in which the cell turns on itself, changing its defective or redundant components into nutrients, which can be used by other cells. This form of cell death occurs when food supply is limited but not entirely cut off, such as in heart failure.

The most sophisticated form of cell death, however, is unlike the other two types. Apoptosis, a Greek word used to describe falling leaves, is a programmed form of cell death. When a cell becomes old or disrepair sets in, it is nudged, usually by signaling molecules, to undergo a form of controlled self-demolition. Unlike in necrosis, the cell doesn’t burst, doesn’t tax the immune system, but quietly dissolves. Apoptosis is the reason our bone marrow doesn’t weigh two tons or our intestines don’t grow indefinitely.

As important as apoptosis is to death, it is essential for life. While as humans, we often consciously or unconsciously hope to achieve immortality, immortality has a very real existence in the cellular world — it’s called cancer. In fact, most cancers occur because of defects in apoptosis, and most novel cancer therapies are designed to allow cell death to occur as it normally would.

In many ways, therefore, life and death at a cellular level are much more socially conscious than how we interface with these phenomena at a human level. For cells, what is good for the organism is best for the cell. Even though cells are designed entirely to survive, an appropriate death is central to the survival of the organism, which itself has to die in a similar fashion for the sake of the society and ecosystem it inhabits.

We humans spend much of our lives denying death. Death, however, is not the enemy. If there is an enemy, it is the fear that death arouses. The fear of death often induces us to make choices that defy the biological constraints of our existence. Such choices often lead us to a fate that more closely resembles necrosis, involving the futile activation of innumerable resources eventually resulting in a cataclysmic outcome, rather than apoptosis. Furthermore, even as we hope to defy our mortality, our cells show the devastation that can occur for the organism if even one cell among billions achieves immortality.

When I asked Robert Horvitz, the Nobel Prize-winning biologist at the Massachusetts Institute of Technology who was part of the group that discovered apoptosis, what lessons we could learn from cell death, his answer demonstrated exactly why we have failed to understand death in the context of our lives: “Only once before has someone approached me to discuss the existential questions that might relate what is known about cell death to human existence.”

The question for us, then, is: What is the human equivalent of apoptosis in the context of our society? One way to approach that question is to look at what the human equivalent of necrosis is. To me, if a human being is in the hospital with intensive, life-sustaining therapies such as artificial respiration, nutrition or dialysis sustaining them with little hope of recovering reasonable brain function, such a state could be considered necrosis. Almost any other alternative, whether one dies in the hospital having rescinded resuscitation or intubation (DNR/DNI), at home with hospice services or with the aid of a physician’s prescription, has much more in common with apoptosis.

We have striven endlessly to answer some of our most crucial questions, yet somehow we haven’t tried to find them in the basic machinery of our biology. Apoptosis represents a pure vision of death as it occurs in nature, and that vision is something we might aspire to in our own deaths: A cell never dies in isolation, but in clear view of its peers; it rarely dies of its own volition; a greater force that is in touch with the larger organism understands when a cell is more likely to harm itself and those around it by carrying on. Apoptosis represents the ultimate paradox — for the organism to survive, the cells must die, and they must die well. “There are many disorders in which there is too little apoptotic death,” Dr. Horvitz said, “and in those cases it is activating apoptosis that could increase longevity.”

And finally, a cell also understands better than we humans do the consequences of outlasting one’s welcome. For though humanity aspires to achieve immortality, our cells teach us that a life without death is the most unnatural fate of all.

Complete Article HERE!

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Hospital volunteers unlock deep mysteries with dying patients

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.

by DAVID WHITING

[T]here is life and death and the in-between.

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.

“It’s rare,” Bennett says, “but it does happen.”

The mystery of the in-between.

Complete Article HERE!

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Nursing my dying mother made me determined that everyone should have a ‘good’ death

By Adrienne Betteley

[W]hen my mum Joan died of oesophageal cancer in 2014, she was in the place she wanted to spend her last days – the spare bedroom at home – with me and my dad, Cliff, by her side.

I’d spent the last week in a camp bed next to Mum, wiping her lips and mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said “Adrienne, I have to thank you for being the most wonderful daughter.” Afterwards, our district nurse made my dad a whisky and me a cup of tea as we said our final goodbyes.

Not without serious difficulty

Mum had a ‘good death’, but not without serious difficulties at times. I can’t help thinking it was my background as a district nurse that allowed her to die at home with her family. My experience meant I was listened to, and I pushed for her to get what she needed, such as acupuncture at the local hospice to relieve her crippling pain from arthritis. I knew what to expect and what conversations to have. We had early discussions about how she wanted to die (at home, not in hospital) and where (not next to Dad in their bed), which we call Advance Care Planning in the medical profession. At Macmillan, we believe that more needs to be done to ensure people are planning for their deaths, so their wishes – such as where they die – can be met.

Sadly, a death like my mum’s is denied to so many in this country. And I believe it would have been impossible for her too, had she not happened to have a nurse for a daughter. I had to fight to get her the care she desperately needed. Services are depleted, especially out of hours. You can’t choose when advanced cancer will cause you pain, but getting pain-relief at night or on weekends can be impossible. In her final days, there was no availability for a night sitter. Thankfully, I could be by her bedside, but had I not been, I’m convinced she would have died in hospital against her wishes.

Findings published in the British Medical Journal last week help explain why some people aren’t getting enough support when they are dying. Care for dying people varies hugely across different regions, both in how much money services are allocated and what care they offer. Figures suggested that, in most parts of the country, there are no specialist pain control teams, and, where they are in place, most operate only in normal working hours with no cover overnight. Until you’ve had a loved one in pain, with no way of providing them relief, it’s hard to appreciate the urgency of this situation.

Having a choice

Pain relief is the very least we should expect at the end of our lives. But it’s also important that, where possible, patients can die in a place of their choosing. We know that most people with advanced cancer would prefer to die at home, but not many of them actually do. Without round-the-clock community nursing, it’s hard to see how this will improve.

My days as a district nurse taught me that getting things right for people at the end of their life takes time. Decisions made about treatment affect how that person will spend their last months, weeks, hours, in this world. But time is something our overstretched workforce doesn’t have. Last month came another heart-breaking revelation – that over two thirds of nurses ‘don’t have time’ to care for dying patients. Is this really what we’ve come to? Something has to change.

Painless death must be priority

I know what a good death looks like, and that it is achievable. But to give everyone a chance to die without pain, and in the place they want to, care for dying people needs to be a priority across the country. As the NHS and local councils set out their plans to transform healthcare, it’s vitally important that they take into account how they will care for people at the end of their lives. At Macmillan, we’ll be monitoring these plans closely to make sure they do.

Those last few weeks with my mum were exhausting, but they were special and irreplaceable. Helping her in her final days with the people she loved, in the house she knew, was the most meaningful thing I’ve ever done. Caring how people die isn’t just about death, but about the value we place on life.

Complete Article HERE!

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A Death in the I.C.U.

By DANIELA J. LAMAS, M.D.

[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.

Complete Article HERE!

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The euthanasia debate is polarised, yet shared concerns unite all sides

People with opposing views on legalising the right to die agree palliative care is inadequate. We need to build on this common ground

Research funded by the Joseph Rowntree Foundation found that people were united in compassion for those with terminal illnesses.

By

[B]rigit Forsyth, the actor best know as Thelma in Whatever Happened to the Likely Lads? is currently playing a terminally ill musician on stage. Her character in Killing Time says she’s a “prime candidate for a one-way trip to Switzerland”. Forsyth has disclosed that her GP grandfather helped dying patients end their lives and that she is in favour of euthanasia. Her comments are the latest in a long line of opinions on legalised assisted dying reported in the press, which has a habit of oversimplifying the complex arguments for and against. And this seems to be damaging our ability to hold meaningful public debate on the subject.

With this in mind, a study funded by the Joseph Rowntree Foundation sought the views of people with strongly opposed opinions on the matter. Participants in both groups included people with palliative care backgrounds, older and disabled people, those from organisations concerned with care and support and individuals from academic, social work and policy backgrounds.

What emerged is a surprising amount of common ground. People with apparently polarised views on legalising the right to die often shared areas of interest and concern. It is these areas that should form the basis for further public discussion, argues the report, Assisted Dying: Developing the Debate, which is published on Wednesday by the Shaping Our Lives network of user-led groups, service users and disabled people.

Shared concerns included clear agreement that palliative care for terminally ill people is inadequate. Whether for or against assisted dying, participants showed a willingness to discuss quality of life for terminally ill people, the value placed on good-quality care, and how to invest in and provide access to this care in the face of economic inequality.

Participants recognised that the debate on legalising assisted dying was taking place in an unequal society: we often place lower social value on older, sick, and disabled people. The research identified a willingness to discuss prevailing societal values, including the concept of “being a burden” on society; the value society placed on social care and support work; and our social attitudes towards death and dying. “How should assisted dying be funded?”, “Where should it be performed?”, and “What methods and means of self-administering a fatal dose should be used?”, were just some of the common questions raised.

Despite disagreement about the extent to which detailed processes and safeguards should be included in assisted dying legislation, participants from across the spectrum of opinion generally agreed that the “how” questions were not being discussed in enough depth.

Areas of shared understanding also emerged when respondents discussed ethical and existential ideas around death and dying, including the psychological aspects of pain and suffering, both for individuals and their loved ones. “All participants had a wish to find the best way forward with compassion for people who are terminally ill, regardless of being for or against legalising assisted dying,” the report concludes.

The study shows that the issues are far more complex than much of the public debate has so far allowed. Death and dying is a core issue for human beings, and public debate must reflect this. It is time to embrace the personal, social, policy and ethical issues that participants have highlighted.

Back in the theatre, Forsyth’s dying musician is visited by a young carer (Zoe Mills) who feels it is her duty to help put older people out of their misery. According to the reviews, she comes to realise that life and death is more nuanced.

Complete Article HERE!

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How to Die Well

By Jessica Nutik Zitter

[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.

Complete Article HERE!