How doctors are failing us in death

Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life

By

Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. "The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions," writes Mohamed Dhanani. "This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud."
Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”

I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.

It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.

Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”

He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.

Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.

The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.

Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.

Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.

On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.

In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.

Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.

Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.

As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.

Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.

Complete Article HERE!

Do You Want to Be Awake For Your Death?

By Chris Bodenner

 

 

Jennie Dear has an evocative piece for us examining the scant evidence that scientists have so far about the mysterious threshold between life and death—what the body goes through and how a person subjectively feels it, both in terms of pain and hallucinations:

“A lot of cardiac-arrest survivors describe that during their unconscious period, they have this amazing experience in their brain,” [neuroscientist Jimo Borjigin] says. “They see lights and then they describe the experience as ‘realer than real.’” She realized the sudden release of neurochemicals might help to explain this feeling. … Most of the patients interviewed [for a study at a hospice center], 88 percent, had at least one dream or vision.

One reader says of Dear’s ostensibly morbid piece (“What It Feels Like to Die”): “The article is comforting in a way I did not anticipate.” Another reader agrees:

I kissed my dad goodbye on the forehead right before he died. He smiled briefly. So, this article was some comfort in maybe explaining that smile of his.

This next reader also lost her father:

I remember when my dad was dying, and my mom forbade any of us from telling him that he was dying. I thought that that was terribly selfish on her part, and I told my husband that if I were dying I would want to know.

When my mom passed away, she was “treated” to the experience of my sisters bitterly arguing as to who was the favorite. (I knew I wasn’t and just held her hand.) My husband got my sisters to stop. Finally, the doctors came in and actually said she had permission to die … Mom was like that; you had to have permission in her mind for everything.

My dear husband is gone now, and I just hope that when I go, I’ll be thinking of him.

That reader’s line—“if I were dying I would want to know”—prompted a question in my mind I’ve long answered in the affirmative: “Do you want to be awake for your death and know it’s coming?” The conventional wisdom says most people prefer to die in their sleep, but, as long as there’s no intense pain involved, sleeping seems like a disappointing way to experience one of the most profound parts of life—it’s ending. And whenever I think of that question, I’m reminded of these lyrics from Björk’s “Hyperballad”:

I imagine what my body would sound like
Slamming against those rocks

And when it lands
Will my eyes be closed or open?

Would you rather be sleep or awake? How exactly would you prefer to die? What’s the ideal situation? Email hello@theatlantic.com if you’d like to share.

Back to a few more stories from readers regarding the death of a loved one. This memory is particularly poignant:

Twelve months ago, my 33-year-old daughter Phoebe began to die from metastatic melanoma. Over the next 10 weeks at a hospital in Melbourne, she went through each of the experiences outlined in Jennie Dear’s article. During this time, Phoebe asked her nurse how would she know when she was about to actually die. Donna told her that something would happen and she would know—both vague and oddly specific, but Phoebe was satisfied.

A week before her death, having gotten her pain under control, Phoebe was at home to say goodbye to her animals, clean out her cupboards, and give away her possessions. She was standing in the yard throwing a ball for the dog when she suddenly sat down, as I watched from the kitchen. I’m sure she realized as she collapsed to the bench that her time had come. I doubt that there could be a lonelier moment in a person’s life.

She didn’t speak again. Her hearing and hand gestures reduced over a few days to squeezing, then nothing but breathing quietly. Her brother-in-law, who was with her at the end, said she simply stopped breathing.

Each person’s death is different, so I found Dear’s article comforting in a way I did not anticipate.

001

One more reader for now:

My father was put into hospice, and all his meds were stopped. He “recovered” and lived another six months. After they “kicked him out” of hospice, he and I spent a lot of quality time together. When the end came, he was ready even though he could no longer speak. The hospice nurse came and looked at all the meds and found that while we still had the liquid morphine, we no longer had the Ativan, so we ordered a stat delivery from the pharmacist.

Giving morphine to a dying person can feel a lot like murder, and listening to the death rattle is more distressing than listening to a crying infant, but I think that the death experience is far worse for the person attending the death than for the one who is dying.

The Ativan was given to my father late in this process, but that was the drug which provided him with joy and relief. Shortly after he received the drug, I believe I witnessed him greeting his mother who had died 40 years ago.

My father then developed what is called a Cheyne-Stokes respiration; he would breath rapidly for a few minutes and then stop breathing. He resumed breathing like clockwork at 65 seconds from his previous breath. This lasted for hours. His last breath sounded much like a laugh, and I thought it was his way of saying good-bye.

I thought the event would be gruesome, but it was a special bonding experience which has helped me to reduce my fear of dying.

Complete Article HERE!

Dying Dog Wouldn’t Miss His Best Friend’s Wedding For The World

By Stephen Messenger

There’s no greater gift than to be able to share life’s most precious moments with a friend — even if they sometimes need a little help along the way.

For the last 15 years, Charlie the dog had been there as his owner, Kelly O’Connell, reached many milestones on the road to adulthood. And in a touching final act, the faithful pup was there during one of her biggest.

980x

Prior to O’Connell’s wedding in Colorado earlier this month, no one was sure that Charlie would live to be a part of it. The old dog had been diagnosed with a brain tumor, leaving his body weakened and frail.

When the time came to walk the aisle, Charlie was too tired to move. But rather than leave him behind, one of the bridesmaids decided to carry him.

image

Photographer Jen Dziuvenis, a family friend, captured the moving scene — knowing how important it was for O’Connell to have her old friend by her side.

“Everyone was trying to hold it together,” she told The Dodo. “It was just one of the most loving things I’ve ever seen. It just touched all of us so much.”

image-1

There was no doubt that Charlie being there meant the world to his mom.

“It was just people who love their dog doing what you do for a sick family member,” said Dziuvenis. “After the ceremony, she just kept saying, ‘Charlie, you’re here. You made it.'”

980x-1

Sadly, a little over a week after the wedding, Charlie passed away.

The legacy of love he leaves behind, however, won’t soon be forgotten.

image-2

Complete Article HERE!

Belgium minor first to be granted euthanasia

Belgium is the only country that permits euthanasia without age restrictions
Belgium is the only country that permits euthanasia without age restrictions

A terminally-ill minor has become the first to be helped to die in Belgium since age restrictions on euthanasia requests were removed two years ago, officials say.

The head of the federal euthanasia commission confirmed the case but gave no further details.

Belgium is the only country that allows minors of any age to choose euthanasia.

They must have rational decision-making capacity and be in the final stages of a terminal illness.

The parents of the under-18 year olds must also give their consent.

“Fortunately there are very few children who are considered [for euthanasia] but that does not mean we should refuse them the right to a dignified death,” Wim Distelmans of the federal euthanasia committee told the Het Nieuwsblad newspaper.

He told Reuters news agency the case had been reported to his committee by a local doctor last week.

The case occurred in Flemish-speaking Belgium, reports RTBF (in French), the public broadcaster for Belgium’s French-speaking community.

The age of the minor has not been reported.

The Netherlands also allows euthanasia for minors, but they must be aged over 12 years old.

Belgium lifted the age restrictions in 2014. The law passed by parliament said the child would have to be terminally ill, face “unbearable physical suffering” and make repeated requests to die before euthanasia is considered.

Many people, including church leaders and some paediatricians, questioned whether children would be able to make such a difficult choice.

Belgian Paralympian Marieke Vervoort, who suffers from an incurable degenerative muscle disease, says she will choose euthanasia, but not yet.
Belgian Paralympian Marieke Vervoort, who suffers from an incurable degenerative muscle disease, says she will choose euthanasia, but not yet.

Where is assisted dying permitted?

  • The Netherlands, Belgium and Luxembourg permit euthanasia and assisted suicide
  • Switzerland permits assisted suicide if the person assisting acts unselfishly
  • Colombia permits euthanasia
  • California last year joined the US states of Oregon, Washington, Vermont and Montana in permitting assisted dying
  • Canada passed laws allowing doctor-assisted dying in June of this year

How old must the patient be?

Only the Netherlands and Belgium permit euthanasia for patients under the age of 18.

In the Netherlands, a competent patient between the ages of 16 and 18 may request euthanasia or assisted suicide. The parent or guardian does not have a veto, but must be consulted. Competent patients aged between 12 and 16 may also qualify, but only if their parent or guardian consents.

In Belgium, a competent patient under the age of 18 may request euthanasia with parental consent. Additional scrutiny of the child’s competence is required, and suffering based on a psychiatric disorder is excluded.

How many people take this option?

The rate of euthanasia in the Netherlands has remained fairly stable at 2.8% of all deaths (in 2010), according to Penney Lewis, Professor of Law at King’s College London.

The most recent survey of doctors in the UK was in 2007-08. The rate of euthanasia was reported to be 0.21% of all deaths, and a similar rate has been reported in France (in 2009), even though euthanasia remains illegal in both countries.

In contrast, research carried out in Flanders, Belgium found the rate prior to legalisation was unclear, with separate surveys reporting rates of 0.3% of all deaths in the region (in 2001-02) and 1.1% (in 1998). The rate has risen steadily since legalisation in 2002 to 4.6% of all deaths in the most recent survey in 2013.

What do the different terms mean?

Euthanasia is an intervention undertaken with the intention of ending a life to relieve suffering, for example a lethal injection administered by a doctor

Assisted suicide is any act that intentionally helps another person kill themselves, for example by providing them with the means to do so, most commonly by prescribing a lethal medication

Assisted dying is usually used in the US and the UK to mean assisted suicide for the terminally ill only, as for example in the Assisted Dying Bills recently debated in the UK

Complete Article HERE!

Take control over the end of your life: what you need to know about advance care directives

By Nola Ries

Take control over the end of your life: what you need to know about advance care directives.
Take control over the end of your life: what you need to know about advance care directives.

Many agree on the factors contributing to a good death. People want to be treated with dignity, have relief from pain and, as much as possible, to control what happens to them.

Advance care planning is one way to exercise control. The process involves discussing and expressing preferences about the kind of care you would or would not want in a situation where you lack the mental capacity to make decisions.

As part of this process, you can write an advance care directive – a document that can be legally binding. It states your views and instructions about health care and other personal matters.

You can also appoint someone you trust to be you health care decision-maker. Despite its usefulness, only a small number of Australians (around 14%) currently have an advance care directive.

Why have a directive?

Studies show at least one-third of patients receive non-beneficial treatments at the end of their life, including tube-feeding and surgical procedures when there is little hope of the patient getting better. This is despite many older Australians saying they do not want medical interventions to keep them alive when their quality of life is poor.

With a good advance care directive in place, people are more likely to have their wishes for care respected. People with a directive are also more likely to experience fewer unwanted medical interventions, less likely to be moved from their home or community care to a hospital, and less likely to die in a hospital.

a-directive
A directive means you can tell people your health care wishes so your choices can be legally respected.

If a patient who doesn’t have a directive is seriously ill and unable to communicate, doctors will consult with family or others close to the patient about their care. Family members and caregivers often experience stress and guilt when making decisions for a loved one at the end of their life. These decisions are made easier if they are guided by the values and preferences expressed in an advance care directive.

Are directives legally binding?

In Australia, the legal context for advance care planning is complicated as every state and territory has its own laws, but they have common principles. For instance, each law respects the right of an adult who has mental capacity to plan in advance for their health care.

There are two kinds of directives: statutory and common law. A statutory directive means the person completes a document that meets specific government requirements – such as this one in South Australia or this one in Queensland. This week, the Victorian government introduced a bill to parliament to make advanced care directives legally enforceable.

New South Wales and Tasmania don’t have statutes that create forms for advance care directives, but people can make common law directives. This means they can state their health care wishes in their own way and they can be legally respected.

In 2009, the NSW Supreme Court ruled that a hospital had to follow the medical instructions a man had recorded in worksheets. The man was hospitalised with serious illness, lost consciousness and went into kidney failure. The court said the hospital had to respect the written instructions that refused blood transfusions and dialysis.

States that have statutory advance directives may also allow a person to make a common law directive. So it is not always necessary to use a government form. People interested in making an advance directive or appointing a health-care decision-maker should look up the rules in their state or territory; there are some good websites with accurate information.

What’s in a directive?

People often think of an advance care directive as a document that refuses consent to specific treatments. For example, you can specify you don’t want CPR or tube-feeding if you have a life-threatening medical problem with little chance of recovery.

This is true. But directives can also be used to document your values, say what quality of life means to you and specify if you have spiritual or lifestyle beliefs you want respected. For instance, you can write down things that would help create a home-like environment if you have to be cared for in a facility, such as music you would like to listen to or treasured items you would like in your room.

A person might complete an official statutory form to appoint someone as their health-care decision-maker, then attach a statement of values.

A statement of values, wishes and preferences can be helpful for appointed decision-makers and for care providers. Websites such as My Values can help you consider issues about medical care and dying you may not have thought about before.

What else do I need to know?

You are encouraged to review your advance care directive, and other legal documents, to make sure they are up-to-date and reflect your current wishes and instructions.

It is also vital to share your directive with your health-care providers, appointed decision-maker (if you have one), family members and other loved ones who may be called on to help make decisions. Doctors cannot follow a directive if they don’t know it exists.

There is no mandatory central registry in Australia to make sure doctors have access to directives when needed. But people with an electronic health record – known as My Health Record – can include their advance care directive information there.

Advance care planning is typically promoted in health-care settings. But some people are more likely to talk to a lawyer than a doctor about their health wishes. This often happens when a person seeks legal help on other aspects of future planning, such as writing a will or appointing a financial decision maker.

I have argued that legal and health professions can work together more effectively to help their clients plan for their future health care. Doing so promotes their clients’ interests and autonomy. It makes sure people’s values and wishes are known, even beyond a time when they can no longer speak for themselves.

Complete Article HERE!

The condolences end. Being a widow doesn’t.

The second year without my husband is in some ways harder than the first.

By Lisa Kolb

being-a-widow

On the morning of my third wedding anniversary last Tuesday, or more accurately, the third time I celebrated my first anniversary, I awoke still hugging my husband Erik’s dark green Patagonia fleece. It was his favorite, the one he’s wearing in the photo we used for his memorial service program. I hadn’t needed to sleep with it in a while, but I did that night.

I lay there amid my luxurious new bedding, which, along with my new apartment, was supposed to make his absence feel less acute, since he was never associated with it. I listened to the uncomfortable hum of complete silence, but was too conscious of the day’s significance to go through my normal routine of blasting NPR in the bedroom and the TV in the living room to cut the quiet. I began to cry.

My husband Erik died at age 34 last May, along with five other young men, in a rockfall and avalanche on Mount Rainier. We were married for 19 months.lisa-wedding-228x300

I talked myself through the motions of breakfast and getting dressed. I wrote out an anniversary card with nowhere to send it, and walked to the old apartment building we shared in Woodley Park back when he was getting his MBA. I sat alone in the shabby linoleum foyer, on top of someone’s Amazon Pantry delivery box, and let memories flood in. I cried some more.

The day ended disastrously, despite the spa treatments and nice dinner with my mom that I thought might shore up the day from being wholly awful. I was upset at the server for bumping into my chair. I was upset that my mother was my dinner partner instead of my husband. I was upset that only a few people had acknowledged the day.

Year One of widowhood, the year when the grief is obvious and raw and ugly, gets all the support and attention. But Year Two is just as hard, and in some ways, it is lonelier.

In the first year, people check in constantly. They call, text, bring food, plan girls’ weekends and excuse — even support — the shuffling around in pajamas crying each day as we wait for the black, hollow feeling to lift.

The Year Two widow, however, is comparatively abandoned to the continued reality of a new and unfamiliar life. We are among the “walking wounded,” those largely without outward signs of trauma (weight regained, estate settled, tears more easily stifled) but who are still under equal, if different, strain.

I had an idea that passing the one-year mark meant the hard part was over, like crossing the finish line of a particularly grueling marathon, or getting to the front of the line at Target on a Saturday. But it is not over.

The one-year anniversary of a spouse’s death is not a benchmark for being healed. It’s merely the day after day 364, followed by 366, 367 and so on. For widows, anticipating relief upon the one-year mark is to be lulled, then hoodwinked, by a false target that implies to others, and even us, that we must be out of the woods, and thus less in need of continued support.

Year One is a struggle merely to eat, merely to get dressed in the morning, merely to think straight while confronting a crushing list of knife-twisting administrative to-dos, like car title transfers and insurance claims and endless calls to robotic customer service reps to tell them to cancel your husband’s account/subscription/delivery because he is dead.

By Year Two, those things are largely resolved. No small feat, yet it is all replaced by an equally daunting, though less obvious, list of second year to-dos, like learning to live with a new, solo identity after years of partnership. Like knowing that other people must think you should be functioning and working at a back-to-normal level again, and being ashamed and frustrated that you are just not. Like facing the immutable truth that he is still — still! — gone, always will be, and there is nothing you can do about it.

In other words, if Year One of widowhood is a struggle for survival, Year Two is the equally difficult struggle to begin living life again. It is hard. Our spouses just keep being dead.

Some days I do not care about anything. Some days, I am tired — tired of fighting my way forward, tired of feeling untethered, tired of not knowing how to configure the printer, tired of figuring out all the finances, tired of needing the television on, tired of taking the trash out myself, tired of still having to cancel his mail, tired of everyone else having a spouse, tired of missing Erik. Just tired.

Sometimes I’m ambushed by the sight of someone who looks like Erik.  It happened most recently on a sunny afternoon last month. I was walking down Connecticut Avenue to pick up allergy medicine at CVS, debating a detour into Krispy Kreme, when I caught sight of a man walking across Dupont Circle. He had Erik’s same lanky build, sandy blond hair and preppy style, right down to the tailored, pale pink collared shirt. I could not help myself and began following the man down Connecticut, then left onto N Street, sobbing behind my sunglasses, allowing myself the indulgence of imagining, just for a moment, that it was Erik walking around like everyone else, off to work or maybe his CrossFit class. When the man turned the corner onto 17th Street I let him go, realizing that on balance, it was probably less unhealthy to eat a donut than chase a ghost.

Bedtime alone is still hard. When I awaken in the middle of the night in a lonely panic, I listen to audiobooks or watch Netflix despite my and Erik’s strict no-devices-in-bed policy until my mind drifts to the story and away from my endless loop of “what will I do with the rest of my life … why can’t you be stronger and just go to the bank already to close his account … don’t forget to send Erik’s grandfather his baseball hat …”

It is a common refrain among widows that support tends to fall way off after a year. I wish more friends and family would reach out like they did early on. One friend used to send texts containing nothing more than emoji hearts, but it was enough. Some sent me articles or books they thought might help; others called to take me to lunch or dinner. Eating across from an empty chair — and knowing the reason for the empty chair — is difficult. Always initiating plans is tiring.

I want someone to really ask how I am doing, and say Erik’s name or talk about him freely. It keeps him alive. I know people are trying not to upset me by bringing him up, but I promise, he is already on my mind.

I do not blame my friends for their increased absence. Supporting a grieving friend long term requires time and stamina — intangibles already in short supply. There’s an emotional limit, as friends and family look to return to the safety of equilibrium. There’s also an intellectual limit: How could others understand the breadth of such a loss unless they have gone through it? Spousal grief is like Vegas: One must experience it personally to really understand how huge and overwhelming it is.

Some things are better, though. I regained the 10 pounds I dropped when Erik died and I could not eat. I feel strong enough to take ballet class again, after months of being too weak and sad to exercise. I socialize more readily. I laugh. I still cry, but the tears fall days apart, rather than hours; I no longer feel the need to add tissues to my wallet/keys/phone/lip balm check before I leave the house. I was able to clear out some — though not all — of Erik’s drawers. I have found some peace, and learned to accept the loss.

I am now dating Brodie, a widower. Uncannily, Brodie’s wife’s memorial service was on the same day as Erik’s, so what began as a supportive friendship through a shared timeline of grief has blossomed into something happy and wholly our own. But there are complications. I worry that he, too, could suddenly die young — perhaps an accident or fluke heart attack — and must give myself a pep talk every time he takes a flight, goes mountain biking or does not call or text immediately at an appointed hour.

I initially told no one we were dating. I am still sometimes reluctant to tell people, out of fear that they’ll think I no longer need support. I am afraid of being judged: Maybe it’s too soon, maybe people will think I am “over” Erik, maybe people will stop talking about him. But I will never be “over” Erik. Widowhood is sort of like being an amputee: Over time, the wound heals over, and I will learn to function well without my missing limb, but there will always be a vital part of me missing.

Later this evening, I will eat dinner alone and go to ballet class. I will go not because I am particularly in the mood, but because I know a step forward begins with a step out the door. I will go because Erik would want me to go and I want to be okay again — for him, for me, for Brodie, for my family. I am still rusty after not dancing for such a long time; my pliés are shallow and my pirouettes are off balance. But I am dancing again, and striving to get better every day.

The widow’s journey is a complicated and lengthy one. Awareness of that length — by us and by others — helps make it survivable. By acknowledging the loss’ enormity, we can forgive ourselves for continued stumbles and setbacks. I hope our family and friends can likewise know to be there to help us rise.

As I walk to my car after class, I will look up to the night sky and I will tell him, as I often do, “I am trying my very best, love.”

Complete Article HERE!

Doctors ‘routinely wrong’ with predictions for when terminally ill will die

Doctors often get it wrong when predicting how long terminally ill people have left to live, new research suggests.

A review of more than 4,600 medical notes where doctors predicted survival showed a wide variation in errors, ranging from an underestimate of 86 days to an overestimate of 93 days.

And it does not appear that more experienced or older doctors are any better at predicting when somebody will die than their younger counterparts.

Doctors' estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found
Doctors’ estimates of when terminally ill patients would die were sometimes out by up to three months, researchers found

he review of existing research on the subject was carried out by a team at the Marie Curie Palliative Care Research Department at University College London (UCL).

Further work is now being carried out to see if it may be possible to train doctors to make better predictions.

Paddy Stone, professor of palliative and end-of-life care at the research department, said: “Delivering the most appropriate care and treatments for those with terminal illnesses is often dependent on doctors making an accurate prognosis.

“Knowing how much time is left can also better equip patients and their carers to make more informed choices about their care. This research suggests that there is no simple way to identify which doctors are better at predicting survival.

“Being more senior or more experienced does not necessarily make one a better prognosticator but we now want to see if we can identify how and why some doctors are better at predicting survival than others and to determine if this is a skill that can be taught.”

Stephanie Aiken, deputy director of nursing for the Royal College of Nursing (RCN), said: “For a dying person and their loved ones, uncertainty can make a very distressing time much harder to deal with.

“Just as when we are born, the precise timing of death can be an inexact science – but nurses looking after people at the end of their lives recognise the positive impact of being as open as possible about what is observed, even if definitive answers can’t be given.

“As a society we have become much better at speaking about death and dying, and respecting and understanding people’s wishes at the end of their lives.

“But there is clearly more to do to improve recognition of the signs that someone is dying, and supporting families with information.”

Janice Jones, whose father, Stephen Flint, died in 2011 from bile duct cancer, said: “We weren’t given an accurate timescale. The doctor was very non-committal. While some people would prefer not to know, having an idea of how much time dad had left would have made us feel more in control of the situation.

“What hurt the most was that the doctor had seen dad just before the evening that he died and hadn’t given us any indication that it would be so soon.

“Knowing would have allowed us to fill our last days with memories rather than get so bogged down in the routine responsibilities of caring for someone who is dying.”

Complete Article HERE!