Caregiving – Page 38 – The Amateur's Guide To Death & Dying

March 21, 2016March 21, 2016

“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

Is a good death one where the medical team did everything to save a life?
Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

March 17, 2016March 17, 2016

A Doctor at His Daughter’s Hospital Bed

By BUD SHAW

I’VE been watching the monitor for hours. Natalie’s asleep now and I’m worried about her pulse. It’s edging above 140 beats per minute again and her blood oxygen saturation is becoming dangerously low. I’m convinced that she’s slipping into shock. She needs more fluids. I ring for the nurse.

I know about stuff like septic shock because for more than 20 years I was a transplant surgeon, and some of our patients got incredibly sick after surgery. So when I’m sitting in an I.C.U. in Omaha terrified that Natalie, my 17-year-old daughter, might die, I know what I’m talking about. I tell the nurse that Natalie needs to get another slug of intravenous fluids, and fast.

The nurse says she’ll call the doctor. Fifteen minutes later I find her in the lounge at a computer, and over her shoulder I see a screen full of makeup products. When I ask if we can get that fluid going, I startle her. She says she called the resident and told him the vital signs, but that he thought things were stable.

“He said to hold off for now,” she says.

“Get me two bags of saline. Now,” I tell her.

She says, “I’m calling my supervisor,” and she runs out of the lounge.

Natalie is awake and looking around when I return. Her face is that dark red that sends waves of panic through my gut.

“What’s wrong?” she says.

I’m a lousy actor.

I know I shouldn’t be my daughter’s doctor. They taught us the problems with that during my first week in medical school. It’s a really bad idea, especially in high-risk situations. There are a few exceptions; like, it’s probably O.K. to sew up your child’s cut on vacation or to hand out antibiotics for uncomplicated infections.

We doctors are also very superstitious that when dealing with family members of physicians, or of V.I.P.s, something is always going to go wrong. The more the Special Person hovers over the care of his or her loved one, the worse the complication will be. I’ve had conversations in which doctors feel they change their routine with V.I.P. patients, and it’s that disruption in routine that allows error to creep into their care.

But right now, I don’t care about any of that. I’m the one with experience taking care of really sick patients, and if I know she needs more fluids, she’s going to get them.

I break into the crash cart, a box on wheels full of stuff they use to resuscitate patients. I pull out two liters of saline solution and run both into Natalie’s IV in less than 20 minutes. Natalie’s pulse slows and her blood pressure rises. An hour later, after the nursing supervisor and on-call resident finally arrive, I’ve finished infusing a third liter. Natalie finally looks better.

This wasn’t the first time during Natalie’s illness eight years ago that I broke my promise to just be her dad. It started a week earlier when she came into the den and showed me the blood she’d coughed up. I suspect a father without my experience might have chalked it up to flu. Maybe because I was a transplant surgeon, and always considered the worst possible cause whenever a patient had a hiccup, I took her to the hospital. I was worried the blood meant she had a bacterial pneumonia, a bad one. And it did.

On the way to the hospital, Natalie took a deep breath and looked at me. “Am I going to die?” she asked. I’m convinced that she would have been dead before morning had I not been a doctor, and one who could recognize septic shock when it affected a normal teenager.

I am haunted by that moment, and others like it involving people I love. My younger son, Joe, almost died 15 years earlier from septic shock, the same kind that killed Jim Henson. He became ill while I was out of town. I flew home and by the time I arrived at the hospital, he looked deathly ill to me. I told the nurse I thought he should be transferred to the intensive care unit, but she said the doctors thought he was improving. Joe stopped breathing during the night and I have blamed myself ever since for not insisting they move him.

Over and over again during my dad’s last few years of life, I felt as if I should have just moved in with him so that I could prevent all the well-meaning doctors and nurses from killing him. Sometimes it was just because his doctors weren’t talking to one another and their conflicting prescriptions sent Dad to the hospital.

In the end, he died about 10 minutes after receiving an injection I didn’t want him to receive. From my home in Omaha, 800 miles away, I asked his caregivers not to give him a medication that I worried could be lethal but that they insisted was routine for old people like him. I thought we’d reached an agreement but while on the road to visit him the next day, I got word that his heart had stopped.

Last year my wife’s mother had colon surgery and when we went to visit her in a rehabilitation center two days after her release, I discovered that she had an abscess the size of a lemon in the wound. It was red and swollen and she said it hurt like the devil but the attendants had assured her it would get better because she was on antibiotics. We took her to the E.R. where the nice doctor used an ultrasound to look it over and told me he didn’t see any pus there. But I could see a large pocket of pus, so I asked him to call the surgeon. The surgeon probably told the E.R. doctor to humor me, but as he took a knife to the wound, no one in the room except the E.R. doctor was surprised when creamy yellow, foul-smelling pus shot out of the wound and soiled the young man’s spotless shoes.

I have more stories like this. What are the odds of that? I don’t think it’s me.

After three days in the hospital, Natalie got better. A new chest X-ray showed that there was much less fluid in her chest. Her fever resolved. They changed one of the antibiotics and the nausea she had had all but disappeared. They told her she could go home. They prescribed antibiotics for her to take at home, and removed her IV catheter.

Natalie went back to school, and the next day was interviewed by a TV reporter because she was one of the few who survived her kind of pneumonia in Nebraska. She talked about her disappointment over missing swim meets.

Natalie recovered from that illness eight years ago, but I didn’t. I stopped operating and taking care of really sick people two years later. I told myself I had become too distracted by my increasing administrative duties to be a safe doctor. I was glad to leave all that behind. Now I just want to sit on the sidelines and marvel as a new generation of doctors performs the miracles. I never again want to step in to rescue someone I love. But I will, if I have to.

Complete Article HERE!

March 3, 2016March 3, 2016

Dying Better, Even If It Means Sooner

Delaying death with excessive, expensive end-of-life care often does more harm than good.

Focus on the simple things, not extraordinary measures

By Karla Erickson

Life expectancy in the United States has increased by 30 years in the last century. Despite our longer lives, many Americans continue to fight death’s inevitability in ways that are costly socially, economically and spiritually. Our over-reliance on medical “miracles” is causing us to throw more and more money at the final year of life rather than grapple with the difficult – but ultimately more gratifying – work of approaching death more willfully by removing the sense of crisis and making the most of the moments that remain.

Defying and delaying death often remains the focus of many care providers even when patients reach their 80s, 90s and 100s. These individual decisions add up to the single greatest expenditure in the national health system: Care in the last 12 months of life accounts for over 25 percent of total expenditures for both Medicare and Medicaid. And while some studies have argued for cost savingsassociated with hospice care, others show cost neutral effects of engaging hospice in the last months of life, depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date.

In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death’s inevitability is also deeply unsatisfying.

Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones.

End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food.

Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible.

The friends and family members who are most proud of how they helped their loved ones often talk about little tokens: a friend clipped part of a favorite flower so her friend could smell her yard one more time; a daughter got the quilting club to gather in the hospice room; a son dug up a favorite book and read and read and read until he was certain his dad could no longer hear his voice.

Obviously families who seek life-prolonging measures do so for more moments with their loved ones. Unfortunately, aggressively delaying death often becomes the focus of the final weeks and days. Pursuing significant medical care often distances us from our loved ones: time spent in waiting rooms, surgical units and follow-up appointments, rather than watching the geese take off over a lake, taking that final trip to one’s homeland or reconnecting with friends who have been distant.

As more of us live longer and die slower, the challenge for many Americans will be to avoid rushing toward solutions and to live, sometimes quietly and uncomfortably, in the shadow of death’s certainty. End-of-life experts have taught me that recognizing limits might save us from some of the real damage we do to each other – asking our elders to fight on too long, to endure too many procedures and tests and surgeries and to spend too much time in the hospital instead of at home or in the garden – or holding the hand of someone who loves them.

Complete Article HERE!

February 16, 2016February 16, 2016

In Palliative Care, Comfort Is the Top Priority

By Paula Span

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

February 6, 2016February 6, 2016

At my father’s bedside, I learned what death looks like

NHS end-of-life and palliative care must focus more on the dying person’s needs and wishes – but for that we need to have proper conversations

By Jon Henley

Jon Henley with his father, mother and son in 2003

My father spent 10 days dying.

He was 84 and he had lost his wife – my mother, whom he adored, and without whom he felt life was a lot less worth living – three years earlier. He died of old age, and it was entirely natural.

The process, though, did not feel that way at all, at least not to me. Dad had been bedridden for months and was in a nursing home. He stopped eating one day, then started slipping in and out of consciousness. Soon he stopped drinking.

For 10 days my sister and I sat by his bedside, holding his hand, moistening his lips. Slowly his breathing changed, became more ragged. During the last few days, the tips of his fingers turned blue. His skin smelled different. His breath gradually became a rasp, then a rattle.

It sounded awful. We were sure he was in pain. The doctor reassured us he wasn’t; this was a human body dying naturally, shutting down, one bit at a time. We had not, of course, talked about any of this with Dad beforehand; we had no plans for this, no idea of what he might have wanted. It would have been a very difficult conversation.

The doctor said he could give him something that would make him at least sound better, but it would really be more for us than for my father. “My job,” the doctor said, “is about prolonging people’s lives. Anything I give to your father now would simply be prolonging his death.”

So we waited. When it finally came, death was quite sudden, and absolutely unmistakable. But those 10 days were hard.

Death is foreign to us now; most of us do not know what it looks, sounds and smells like. We certainly don’t like talking about it. In the early years of the 20th century, says Simon Chapman, director of policy and external affairs at the National Council for Palliative Care, 85% of people still died in their home, with their family.

By the early years of this century, fewer than 20% did. A big majority, 60%, died in hospital; 20% in care homes, like my father; 6% in hospices, like my mother. “Death became medicalised; a whole lot of taboos grew up around it,” Chapman says. “We’re trying now to break them down.”

There has been no shortage of reports on the question. From the government’sEnd of Life Care Strategy of 2008 through Julia Neuberger’s 2013 review of the widely criticised Liverpool Care Pathway to One Chance to Get it Right, published in 2014, and last year’s What’s Important to Me [pdf] – the picture is, gradually, beginning to change.

The reports all, in fact, conclude pretty much the same thing: the need for end-of-life care that is coordinated among all the services, focused on the dying person’s needs and wishes, and delivered by competent, specially trained staff in (where possible) the place chosen by the patient – which for most people is, generally, home.

“It’s not just about the place, though that’s important and things are moving,” says Chapman: the number of people dying in hospital has now dropped below 50%.
“The quality of individual care has to be right, every time, because we only have one chance. It’s about recognising that every patient and situation is different; that communication is crucial; that both the patient and their family have to be involved. It can’t become a box-ticking exercise.”

Dying, death and bereavement need to be seen not as purely medical events, Chapman says: “It’s a truism, obviously, but the one certainty in life is that we’ll die. Everything else about our death, though, is uncertain. So we have to identify what’s important to people, and make sure it happens. Have proper conversations, and make proper plans.”

All this, he recognises, will require “a shift of resources, into the community” – and funding. Key will be the government’s response to What’s Important to Me, published last February by a seven-charity coalition and outlining exactly what was needed to provide full national choice in end-of-life care by 2020. It came with a price tag of £130m; the government is expected to respond before summer.

In the meantime, though, a lot of people – about half the roughly 480,000 who die in Britain each year – still die in hospital. And as an organisation that has long focused on curing patients, the NHS does not always have a framework for caring for the dying, Chapman says.

But in NHS hospitals too, much is changing. There has been a specialist palliative care service – as distinct from end-of-life care, which is in a sense “everyone’s business”, involving GPs, district nurses and other primary care services – at Southampton general hospital and its NHS-run hospice, Countess Mountbatten House, since 1995, says Carol Davis, lead consultant in palliative medicine and clinical end-of-life care lead.

People die in hospital essentially in five wards: emergency, respiratory, cancer, care of elderly people and intensive care, she says: “Our job is about alleviating patients’ suffering, while enabling patients and their families to make the right choices for them – working out what’s really important.”

Palliative care entails not just controlling symptoms, but looking after patients and their families and, often, difficult decisions: how likely is this patient get better? Is another operation appropriate? What would the patient want to happen now (assuming they can’t express themselves)? Has there been any kind of end-of-life planning?

Of course many patients in acute hospital care will not be able to go home to die, and some will not want to, Davis says: “Some simply can’t be cared for at home. If you need two care workers 24/7, it’s going to be hard. Others have been ill for so long, or in and out of hospital so often, they feel hospital is almost their second home. So yes, choice is good – but informed choice. The care has to be feasible.”

In 2014, the report One Chance to Get it Right [pdf] identified five priorities in end-of-life care: recognise, communicate, involve, support, and plan and do. (“Which could pretty much,” says Davis, “serve as a blueprint for all healthcare.”) The first – recognise, or diagnose – is rarely easy. How does a doctor know when a patient is starting to die?

“There are physical signs, of course,” says Davis. “Once the patient can’t move their limbs, or can no longer swallow.” But, she says, “we have patients who look well but are very ill, and others who look sick but are not. In frail elderly people – or frail young people – it can be hard to predict. Likewise, in patients with conditions like congenital heart disease, where something could happen almost at any moment.”

Quite often, Davis and her team face real doubts. “Right now,” she says, “I have a patient in intensive care, really very ill. They probably won’t pull through, but they might. I have another doing well, making excellent progress – but they’ve been in hospital for three months now. They’re very, very weak, and any sudden infection … You just can’t predict.”

Which is why communication, and planning, and involving the family – all those difficult and painful conversations that we naturally shy away from – are so very important.

It could well be, for example, that my father would actually have wanted his death to be prolonged: he certainly clung on to life with a tenacity that startled my sister and me. We will never know, though, because we didn’t talk about any of it.

“It is our responsibility – all of our responsibility – to find the person behind the patient in the bed,” Davis says. “One way or another, we have to have those conversations.”

Complete Article HERE!

February 1, 2016February 1, 2016

Families smuggling lethal drugs into hospitals so loved ones can die: Nitschke

By Julia Medew

dying man — People have smuggled lethal drugs into hospitals so their loved ones can die, Philip Nitschke says.

Three people smuggled lethal drugs into Australian hospitals last year so their loved ones could secretly take their own lives when nobody was watching, euthanasia campaigner Philip Nitschke claims.

The head of Exit International said all three patients were elderly people with serious illnesses when they took a lethal drug in their hospital beds. They were being cared for at the Royal Prince Alfred and Concord hospitals in Sydney and the Austin hospital in Melbourne.

In each case, a partner or adult child took the lethal drug to them in hospital, Mr Nitschke said. The patients had previously acquired the drug in case they wanted to take their own lives one day.

Mr Nitschke, a former medical practitioner, said the three people took their drug overnight while no hospital staff were watching. The next morning, their deaths were recorded with no suspicion about how they died.

“In each one of those three cases, there have been no questions asked. It’s not surprising because they were very sick. The assumption was that they just died,” he said.

The cases are now being used by Mr Nitschke in his workshops on assisted death. He said while many people fear they will not be able to take their own lives in hospitals or other institutions such as nursing homes, these recent stories show it can be done.

However, he warned that if the relatives were caught smuggling a lethal drug into a hospital, they could be charged with criminal offences including assisting a suicide.

Mr Nitschke recently tore up his medical licence after the Medical Board of Australia demanded he stop discussing suicide if he wanted to keep his medical registration. He has since continued his work with Exit International.

Dr Rodney Syme, of Dying with Dignity Victoria, said he had never heard of families assisting people to die in hospitals in such a fashion. However, he said the reports added to the case for assisted dying laws in Australia. If there were more options for people to end their lives when the time was right for them, he said clandestine suicides in hospitals would not happen.

Margaret Tighe, of Right to Life Australia, said it was appalling that Mr Nitschke was promoting these deaths. She said the hospitals should investigate them and boost their security.

While spokespeople for the hospitals said they did not know anything about the deaths, a spokesman for NSW Health Minister Jillian Skinner said: “Any matter of this nature should be referred to the appropriate agency, the police, and accompanied by details and evidence of the illegal activity.”

A spokesperson for federal Health Minister Sussan Ley said she was “disturbed by any serious breach of accepted or ethical medical standards and this certainly falls into that category”.

“Obviously our department will need to obtain more information from the relevant health offices in both states before we could comment in any detail,” her spokesperson said.

A spokeswoman for Victorian Health Minister Jill Hennessy would not comment on the reported deaths, but said the Victorian government was introducing laws this year to give people more choice about the kind of medical care they want or do not want in the event of future illnesses such as cancer or dementia.

The Australian Medical Association would not comment on the report, but Secretary of the Australian Nursing and Midwifery Federation, Lee Thomas, said: “It is unfortunate that any person needs to resort to drastic measures to relieve their pain.”

“Overwhelmingly ANMF members support the right to die with dignity and many have been engaged in the dying with dignity movement,” her statement said.

Complete Article HERE!

January 26, 2016January 27, 2016

This doctor helped dying people end their lives with dignity. Then he was diagnosed with cancer.

By Brooke Jarvis

Peter Rasmussen was always able to identify with his patients, particularly in their final moments. But he saw himself especially in a small, businesslike woman with leukemia who came to him in the spring of 2007, not long before he retired. Alice was in her late 50s and lived outside Salem, Oregon, where Rasmussen practiced medical oncology. Like him, she was stubborn and practical and independent. She was not the sort of patient who denied what was happening to her or who scrambled after any possibility of a cure. As Rasmussen saw it, “she had long ago thought about what was important and valuable to her, and she applied that to the fact that she now had acute leukemia.”

From the start, Alice refused chemotherapy, a treatment that would have meant several long hospitalizations with certain suffering, a good chance of death, and a small likelihood of truly helping. As her illness progressed, she also refused hospice care. She wanted to die at home.

Six months after Rasmussen started seeing Alice, he wrote in her chart about his admiration for her and her husband: “Together they are doing a wonderful job not only preparing for her continued worsening and imminent death but also in living a pretty good life in the meantime.” But there were more fevers and bleeding and weakness. In late January, she asked him to write her a prescription for pentobarbital.

Three days later he arrived at her farmhouse with four vials of bitter liquid. Though the law didn’t require it, he liked to bring the drug from the pharmacy himself, right before it was to be used, so that there would be no mistakes.

Over nearly three decades as a physician in Oregon, Rasmussen had developed many strong beliefs about death. The strongest was that patients should have the right to make their own decisions about how to face it. He remembers the scene in Alice’s bedroom as “inspiring, in a sense” — the kind of personal choice that he’d envisioned during the long, lonely years when he’d fought, against the disapproval of nearly everyone he knew and all the way to the U.S. Supreme Court, for the right of terminal patients to decide when and how to die.

By the time he retired, Rasmussen had helped dozens of patients end their lives. But he kept thinking about Alice. Her pragmatism mirrored the image he had of how he would face such a diagnosis. But while he had often conjured that image — had faced it every time he walked a dying patient through a list of inadequate options — he also knew better than to fully believe in it. How could you be sure what you would do before the decisions were real?

“You don’t know the answer to that until you actually face it,” he said later — after his own diagnosis had been made, after he knew that he had cancer and that he would soon die. “You can say you do, but you don’t really know.”

The knowledge hid in the back of Rasmussen’s mind — a flitting worry you don’t look at directly — for a few days before he really comprehended it.

He was on his way home from a meeting of the continuing-education group he had joined after his retirement. One of the group’s members had asked him to let the others know that she had been diagnosed with a glioblastoma — a type of brain tumor whose implacable aggression he knew well. A glioblastoma can cause seizures, memory loss, partial paralysis, even personality changes. You can treat the tumor with surgery, chemotherapy, and radiation, but it will always come back, often in more places. The timeline can be uncertain, but the prognosis never is. The median period of survival after diagnosis is seven months.

As Rasmussen drove away from the meeting, his left hand was draped on the wheel of his Tesla. It felt, as it had for several days, oddly numb, as if he’d been holding a vibrating object for too long. He’d ignored the feeling, chalking it up to spending too much time power-washing pinecones off his cedar-shake roof.

Maybe it was what had happened at the meeting, or the clarity of a wandering mind. All at once he focused on the sensation — on how localized it was, on the fact that it hadn’t gone away — and he knew. Something was wrong. “I’ve either got MS,” he thought, “or I’ve got a brain tumor.”

Instead of driving home he went straight to an urgent-care clinic, where a doctor sent him to the E.R., where another doctor gave him an MRI, which showed a tumor. It was, he learned later, a glioblastoma about an inch in diameter. Barring an accident, it would be the thing that killed him, sometime in the suddenly too near future.

Eight days after his MRI, Rasmussen went to the hospital to have part of his skull cut away and his tumor sliced out. He had considered whether having surgery violated his usual advice about not wasting one’s final months seeking painful and unlikely cures, but because his tumor was localized and fairly accessible, he and his surgeon decided that the odds were good enough to try.

The surgery was a success — though Rasmussen lost the use of his left arm, the entire visible tumor was removed, and he was able to leave the next day. Of course, success was only a slower form of failure: He was still going to die. He never let himself, or anyone around him, forget that his reprieve was temporary. “It’s not if I pass away,” he corrected his lawyer, his accountant, his friends. “It’s when I die.”

Before he retired, Rasmussen had often tried to help his patients and their families think of the process of dying as an opportunity, a chance for clarity and forgiveness, for thoughtful, meaningful goodbyes. He hoped to hold on to that belief for himself. When he pictured a good death, the image was simple: calm and peace, without much physical suffering, and his family with him in the house where he’d lived for 18 years with Cindy, his wife; where the kids had grown up; where the windows looked out on his bird feeders and his flowers.

It wasn’t time yet. Five months after the surgery, he stopped chemo and radiation. He began to feel better, stronger, and was even able to use his left hand a little. Still, every time he had a headache or nausea he wondered whether the tumor was growing back. But whenever he started to feel sorry for himself, he’d administer a stern mental shake: “We all die,” he’d tell himself. “It’s never fair to anybody. So buck up.”

Privately, he had no idea whether or not he’d take advantage of Oregon’s assisted suicide law. He consulted a list that he’d kept of his Death With Dignity patients. At first most had been urgent cases: people with all kinds of terminal diseases, who were suffering intensely and wanted to take the drug right away. As time passed, people began coming to him sooner after their diagnoses, before they knew how their diseases would develop. Some only asked questions, and others wanted to have the pentobarbital handy, a just-in-case comfort that made them feel more in control. The majority of his patients never took the medication.

Every death was different, though most had details in common: reminiscing in advance, goodbyes filled with love, family members saying that it was OK to stop struggling. There was the death with the Harley-Davidsons: He’d pulled up to the house and there were motorcycles everywhere, people in leather drinking beer on the lawn, just the party his patient wanted.

Of course, not everyone wanted a party, and he respected that too. Often there were only a few family members, and sometimes it was just him and the patient, alone together at the last. Only once did someone ask to die completely alone, in quiet privacy behind the closed door of a bedroom.

He remembered a woman whose mastectomy had not stopped her breast cancer from metastasizing to her lungs. Her huge family came in for the weekend. They had a picnic on Saturday, went to church on Sunday, and then all the kids and grandkids filed through her bedroom to say goodbye. He waited outside the door until they were done and then he brought her a dose of pentobarbital. She drank it and died. That one stuck with him: “It was about as ideal a death as I possibly could have imagined.”

In July of last year, Rasmussen went in for a new MRI. The scan showed the tumor, the same size and back in the same place it had been the year before. He consulted with his surgeon, who told him that the tumor was once again a good candidate for removal. Rasmussen would most likely lose the use of his left arm altogether, but if all went very well, he would have a one-in-three chance of living to the second anniversary of his diagnosis.

“I’ll leave tomorrow for the trip,” he told Cindy after meeting with the surgeon — meaning a cross-country road trip that he’d been talking about. Cindy was stunned. She hadn’t thought he’d actually go. But he was adamant, and then he was gone.

He drove east through Idaho, Montana, South Dakota, along long, open stretches of quiet road. He brought recorded lectures to keep him company: one about St. Francis, a series on the Higgs boson, and a particularly interesting lecture about gnosticism.

As he drove, he tried to visualize what his life would be like if he underwent surgery or stopped treatment altogether. He imagined losing more of the use of his left side and eventually ending up in hospice, bedbound. That part didn’t bother him so much. He knew it was coming no matter what. But he didn’t like thinking about stopping treatment, not yet. It was too passive, too final. It just made him too sad.

Somewhere around the ninth day of his trip, he had a thought that excited him. “The task of learning to be a hemiparetic person,” of living with paralysis on his left side, could be an adventure, another learning experience. “To take on a challenge is always satisfying,” he explained later. Relief washed over him. He had made a decision.

He wasn’t planning to have the surgery right away, but an hour after arriving home he had a seizure. Four days later he was back in the O.R., and surgeons were once again scooping a tumor from his brain. He woke to find himself paralyzed not just in his arm, but throughout the left side of his body. For days he was noticeably quiet. After three days he moved to a nursing-care facility. The first morning there, he called Cindy to tell her that he’d been very sad the night before. “Did you cry?” she asked.

“No, I didn’t cry,” he replied. “But I was mourning the loss of my independence.”

On Oct. 1, he was admitted to the hospital for a new MRI. The results showed that his tumor had not only grown back but expanded into the middle of his brain. “I want to go home,” he said.

Cindy set up a hospital bed in the living room looking out over his gardens. His stepchildren arrived from New York and Seattle. For four nights Cindy and the kids stayed by his bed, each night thinking it would be the last. Instead, he grew stronger for a time — a month that Cindy calls “one of the most meaningful experiences I’ve ever had and probably will ever have.” He visited with friends and family, watched a slide show of old pictures, listened as music therapists played his favorite songs on the ukulele.

Rasmussen had already started the paperwork for Death With Dignity, but he didn’t want to add the final touch, his own signature. Near the end of October, he was speaking only a few labored words at a time. One day he asked Cindy to help him stand so he could get up to go to the bathroom, something he hadn’t done in weeks. He was so weak and frail that Cindy told him it was impossible. She says she saw the realization happen then: “This is it.”

On Oct. 29, Rasmussen signed the paperwork and his siblings flew in from Wisconsin, Illinois, and North Carolina. He planned to take the drug the next week, after what Cindy calls “a memorial service while he was still alive.” Sixteen people gathered around Rasmussen; one by one they told him what he had meant to them and what they would remember about him.

He was alert but not talking much on the morning of Nov. 3. His family intertwined their arms in a circle around him and put piano music on the stereo. He raised the cup of secobarbital mixed with juice — papaya, orange, and mango, his favorite — and drank it down. His eyes closed. Cindy, sobbing, realized how similar the scene was to what he used to describe when he came home from someone else’s death. “It was awful,” she says. “But at the same time, I was glad that he was able to end his life on his terms.”

Half an hour later, he quietly stopped breathing.