Tag: Death And Dying

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After Great Pain, Where Is God?

An etching from “The Book of Urizen,” by William Blake.

By Peter Wehner

[T]hese days I find I’m more alert to the grief and sorrow around me than I once was. In part it’s a product of my age, of youth giving way. I’m guessing my situation is not that different from many of yours.

Last month I checked in on a childhood friend whose 13-year-old son committed suicide last year after struggling with a brain injury. He told me, “I’ve stopped crying every day, which is a major transition.” He added, “I spent more than a year trying to get him well and keep him alive, and only in recent days have I finally, mostly, lost that mode of thinking. I don’t have to do anything now because I can’t.” Yet in his dreams, my friend said, his son is still alive and he’s checking on him to make sure he’s O.K.

Another lifelong friend recently died of colon cancer. His wife wrote to me: “I wish I could tell you that we are walking this journey with courage and faith, but that really doesn’t describe our situation at all. The outward courage feels like a ruse to convince ourselves that this immense pain will subside in time, and the weakness of our faith is showing us its shallow limits.”

Sometimes the struggles are not about death but things like addiction. Two weeks ago I spoke to a friend whose wife had told him she no longer wanted to be married to him because of his relapse into alcoholism, which he described as a “deep, dark struggle” that robbed him of his true personality. (He’s now in recovery, trying to rebuild his life.)

Stories like these are hardly the whole of life, and most of the people I know are in a pretty good place. Yet every life has a story, and every story is marked by pain, loss and sorrow. Sometimes we suffer; other times we have to watch people we love suffer. Each situation is difficult in its own way.

I’m no theologian. My professional life has been focused on politics and the ideas that inform politics. Yet I’m also a Christian trying to wrestle honestly with the complexities and losses in life, within the context of my faith. And while it’s fine for Christians to say God will comfort people in their pain, if a child dies, if the cancer doesn’t go into remission, if the marriage breaks apart, how much good is that exactly?

During 1940 C. S. Lewis wrote “The Problem of Pain.” Lewis’s answer to why an all-good and all-powerful God would allow his creatures to suffer pain was a bit too neat and tidy. Among other things, he wrote, “God whispers to us in our pleasures, speaks in our conscience, but shouts in our pain: It is His megaphone to rouse a deaf world.”

Now flash forward two decades to the publication of “A Grief Observed,” which Lewis wrote after his wife’s death. God’s megaphone didn’t just rouse Lewis, it nearly shattered him. In writing about his bereavement, Lewis described what it was like to go to God “when your need is desperate, when all other help is vain, and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.” He added: “Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not ‘So there’s no God after all,’ but ‘So this is what God’s really like. Deceive yourself no longer.’ ”

Years ago I had lunch with a pastor and asked him about his impressions of “A Grief Observed.” His attitude bordered on disdain. He felt that Lewis allowed doubt to creep in when his faith should have sustained him.

My response was the opposite. Perhaps because my own faith journey has at times been characterized by questions and uncertainty, I found the fact that the 20th-century’s greatest Christian apologist would give voice to his doubts reassuring. And Lewis was hardly alone in expressing doubts. Jesus himself, crucified and near death, gave voice to the question many people overwhelmed by pain ask: “My God, my God, why have you forsaken me?”

Jesus’ question, like ours, was not answered in the moment. Even he was forced to confront doubt. But his agonized uncertainty was not evidence of faithlessness; it was a sign of his humanity. Like Job, we have to admit to the limitations of human knowledge when it comes to making sense of suffering. “From the biblical evidence,” the Christian author Philip Yancey has written, “I must conclude that any hard-and-fast answers to the ‘Why?’ questions are, quite simply, out of reach.” So, too, is any assurance that the causes of our suffering, the thorns in our flesh, will be removed. So what, then, does Christianity have to offer in the midst of hardships and heartache?

The answer, I think, is consolation, including the consolation that comes from being part of a Christian community — people who walk alongside us as we journey through grief, offering not pieties but tenderness and grace, encouragement and empathy, and when necessary, practical help. (One can obviously find terrifically supportive friends outside of a Christian community. My point is simply that a healthy Christian community should be characterized by extravagant love, compassion and self-giving.)

For many other Christians, there is immense consolation in believing in what the Apostle Peter describes as an eternal inheritance. “In all this you greatly rejoice,” he writes, “though now for a little while you may have had to suffer grief in all kinds of trials.” It is a core Christian doctrine that what is seen is temporary and what is unseen is eternal, and that what is eternal is more important than what is temporal.

But even so great an assurance as eternal life, at the wrong time and in the wrong hands, can come across as uncaring. It’s not that people of faith, when they are suffering, deny the heavenly hope; it’s that in being reminded of this hope they don’t want their grief minimized or the grieving process overlooked. All things may eventually be made new again, but in this life even wounds that heal leave scars.

There is also, for me at least, consolation in the conviction that we are part of an unfolding drama with a purpose. At any particular moment in time I may not have a clue as to what that precise purpose is, but I believe, as a matter of faith, that the story has an author, that difficult chapters need not be defining chapters and that even the broken areas of our lives can be redeemed.

The book of Isaiah, in prophesying the messiah, describes him as “man of sorrows and acquainted with grief.” We’re told “by his wounds we are healed.” For those of the Christian faith, God is a God of wounds, where the road to redemption passes directly through suffering. There is some solace in knowing that while at times life is not easy for us, it was also hard for the God of the New Testament. And from suffering, compassion can emerge, meaning to suffer with another — that disposition, in turn, often leads to acts of mercy

I have seen enough of life to know that grief will leave its mark. But I have also seen enough of life to know that so, too, will love.

Complete Article HERE!

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Many end-of-life talks end in confusion, study shows

By Dennis Thompson

You’ve filled out a living will, and designated a surrogate to make medical decisions if you’re incapacitated.

But, your end-of-life planning may not be done yet.

That’s because, according to a new study, your surrogate may still not have a clear idea about what you really want done in a crisis situation — even after you’ve discussed your wishes with them.

In the study, seven out of every 10 surrogates didn’t have an accurate understanding of their loved one’s wishes regarding potentially life-altering medical treatment, even though both believed they had adequately discussed the topic.

“There were a lot of surrogates in those pairs where they both said, ‘yes, we’ve had this communication,’ who didn’t have a good understanding of the patient’s goals of care,” said lead researcher Dr. Terri Fried. She is a professor of geriatrics with the Yale School of Medicine.

The surrogates couldn’t accurately say whether their loved one would want treatment even if afterward they would have to live in extreme chronic pain or with severe mental or physical impairments, Fried said.

“Those are the kinds of things that make people say, ‘Oh, maybe I don’t want to get life-sustaining treatment if that’s the way it’s going to leave me,’” she explained.

These results show health-care professionals need to take a more active role in helping patients make end-of-life preparations, and that includes facilitating in-depth conversations between them and their chosen surrogates about their preferences, Fried said.

“It’s becoming more a part of the responsibility of primary care to make sure this happens as part of health maintenance, the same as flu shots or cancer screening,” Fried said. “We need to do a more thorough assessment of what patients have done and haven’t done, so we know what they still need to do.”

For their study, Fried and her colleagues interviewed 350 veterans, all aged 55 or older. The researchers also separately interviewed their end-of-life surrogates.

Just over half of the surrogates were spouses. Another 27 percent were children. The rest had other relationships with the veterans, according to the study.

About two of every five veterans hadn’t bothered to complete a living will or officially designate someone as their surrogate (health care proxy), or talked about the quality of life they’d like to maintain near the end, the findings showed.

And often, surrogates remained in the dark about the loved one’s wishes even if both agreed that they had discussed the matter.

Only 30 percent of surrogates who thought they’d talked it over could display an accurate knowledge of their loved one’s desires regarding quality versus quantity of life, the researchers found.

That’s better than the performance of surrogates who hadn’t had the conversation (21 percent) or pairs that disagreed whether they’d discussed the matter (15 percent), Fried noted.

But that still leaves a majority of people in a position of thinking that their surrogate knows their wishes when the person really doesn’t, the study authors pointed out.

“Part of it is that patients and surrogates don’t really know what the things are that they ought to be talking about,” Fried said.

In joint interviews conducted after the main study, many of the pairs said that “after you asked us those questions, we realized these are the things we need to sit down and talk about,” she added.

Dr. Timothy Farrell is an associate professor of geriatrics with the University of Utah School of Medicine in Salt Lake City. He said that “a visit with a physician is often the first time that such a discrepancy may become apparent.”

Doctors who treat the elderly should consider end-of-life conversations as “anticipatory guidance,” similar to the guidance provided parents during well-child visits, Farrell said.

Either a doctor, a physician assistant, a social worker or some other health-care professional can help lead a facilitated discussion that ensures someone’s wishes have all been communicated to the surrogate, he suggested.

“Being proactive is the key, [as is] regularly coming back to this topic before the crisis occurs,” Farrell concluded.

The study was published March 20 in the Journal of the American Geriatrics Society.

Complete Article HERE!

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It’s not death that he’s afraid of but dying

Noel Conway, who has motor neurone disease, and his wife Carol want to change the law on assisted dying

By Rosemary Bennett

[T]he daffodils are in full bloom outside the cozy Shropshire cottage where Noel Conway prepares for his day in court, spring sunshine streaming through the window.

Typing has become too difficult for the 67-year-old. He can just about manage with a specially-adapted mouse, but has invested in the eye-gaze technology made famous by Stephen Hawking. He is finding it hard going. “I’m so slow. I don’t know how he ever wrote a book using it. But I am preparing for what I know lies ahead,” he says.

This highly articulate, retired adult education lecturer knows it is only a matter of time before he loses his powers of speech. Like Professor Hawking, Mr Conway has motor neurone disease. Unlike the physicist, he won’t live with the illness for years to come. This will probably be his last spring.

It is not death that alarms him but the process of dying. The suffering in the last months and weeks of life for those with MND is notorious. Bit by bit, neurons stop communicating with one another, resulting in difficulty moving, speaking, swallowing and eventually breathing. Mr Conway wants to have the right to say when enough is enough and die in some degree of comfort.

He cannot take his own life — he has not got the strength, and under the current law no one can help him die without risking prosecution and imprisonment. Which is why tomorrow Mr Conway and his wife Carol will take a judicial review to the High Court. Despite his poor health, he will be there in person.

Diagnosed in November 2014, his illness has progressed rapidly, particularly in the past few months. Having lost the power and feeling in his arms in the first stages of the illness, in November the former mountaineer, skier and cyclist caught an ordinary winter bug. “That finished off what strength I had left in my legs,” he said. He now relies on a hoist and uses a power wheelchair.

He can no longer clean his teeth or scratch his head. He gets stuck on his back in bed at night and has to call out for his wife to help him. He wears a ventilator much of the time.

On the plus side, he is still able to talk and does so with intelligence and passion. And he can still eat and drink with help, and the use of a one-way valve straw. “I draw the line at wine, though. I’m not drinking that out of a tumbler and straw.” He refused to have a tube fitted into his stomach for feeding. “The day I cannot eat and drink . . . well I don’t want to be here anymore.”

Noel Conway in 2008. He thinks it is wrong that the wealthy can afford to use Dignitas while others must continue to suffer

However, it is the thought of not being able to move, an inevitability, being trapped in a totally paralysed body, that he finds most harrowing. “I know that when I’m absolutely rigid and immobile, can’t speak or breathe, I want to be able to say right, it’s time to go,” he says. “I do not want to be trapped in a tiny cell inside a pyramid with the sides closing in on me.”

That fear prompted Mr Conway to join Dignitas, the Swiss clinic which offers medically-assisted dying to the ill and disabled. More than 40 Britons end their lives there each year and no one has ever been prosecuted for helping a loved one make the journey there. It is, in effect, a legal form of assisted suicide for the wealthy.

“It was a relief to join. I felt I needed to take control,” he said.

However, he feels there is something fundamentally wrong if the wealthy have an option that no one else has. His entire life he has tried to fight for those who have had no voice. He was a councillor in Blackburn in his early 20s and during his career championed the cause of those who missed out on education first time round to have another chance.

“Only a small number of people can afford Dignitas,” he says. “The fees are about £7,500 and you have to get there on top of that. So it is prohibitively expensive for many. It is inequitable.” It is this passion for fairness that has led him to take his case to court.

Supported by the campaign group Dignity in Dying and having raised £30,000 through crowdfunding, his legal team will ask the court to declare that the blanket ban on assisted dying under the Suicide Act 1961 is contrary to his human rights. They will argue that as a terminally ill, mentally competent adult, his right to a private life includes the right to make decisions on the end of his life.

He has a good case.

The most recent assisted-dying case was taken by Tony Nicklinson, who suffered locked-in syndrome. Although the Supreme Court finally rejected his case, judges were sympathetic and urged MPs to consider changing the law. Mr Conway will argue that they have not done this in any serious way despite polls suggesting overwhelming public support for change. MPs held a brief Friday afternoon debate on a private members’ bill on the issue in September 2015, then voted it down.

“I must say, I am appalled at the way a considerable number of MPs did not even engage with the issue, which is a very serious one for our time,” Mr Conway says.

Complete Article HERE!

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I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

By Stewart Florsheim

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!

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Where you live may determine how you die, study suggests

By JoNel Aleccia

[A]mericans who want to ensure they have a say in how they die should examine the lessons of Oregon, a new analysis suggests.

Seriously ill people in that state are more likely to have their end-of-life wishes honored — including fewer intensive-care hospitalizations and more home hospice enrollments — than those living in neighboring Washington state or the rest of the country.

In 2013, nearly two-thirds of Oregonians who died did so at home, compared with fewer than 40 percent of people elsewhere in the US, according to the report published Wednesday in the New England Journal of Medicine. Previous research had shown that more than 85 percent of Americans say they’d prefer to die at home.

“Obviously, if you’ve spent decades trying to improve your end-of-life care, it’s pretty rewarding to see that something changes,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health and Science University in Portland, who co-led the study.

The review analyzed Medicare fee-for-service claims data from 2000, 2005, and 2013, and it compared end-of-life care in Oregon and Washington — a nearby state with similar demographics and attitudes toward end-of-life care — with the rest of the US, excluding those two states.

It found that in 2013, ICU use in the last 30 days of life was about 18 percent in Oregon, compared with 23 percent in Washington and 28.5 percent in the rest of the US. Nearly three-quarters of patients in Oregon hospitalized in the last month of life were discharged to home, compared with slightly fewer than two-thirds in Washington state and a little more than half — 54.2 percent — in the rest of the US.

More than 40 percent of patients in Oregon were enrolled in home hospice in 2013, compared with about 30 percent in Washington and fewer than 20 percent in the rest of the US, the analysis found.

Oregon, which enacted the nation’s first death-with-dignity law and led the way on implementing portable medical orders for treatment at the end of life, may be reaping the results of those and other efforts, said Tolle’s coauthor, Dr. Joan Teno, a professor of medicine, gerontology, and geriatrics at the University of Washington in Seattle.

“When you look at the patterns, it’s very different than the rest of the United States,” she said. “It’s even different than a borderline state.”

Pat Duty, 64, who ran a Portland floor-covering business with her husband, Jimmy, for years, said Oregon’s palliative care culture helped guide treatment decisions after his 2013 diagnosis of lung cancer and dementia. Jimmy Duty wanted limited medical interventions; he had a do-not-resuscitate order, plus a request to avoid the ICU.

“He was very clear that quality of life was his first choice,” Pat Duty recalled. “We knew we needed to discuss these things while he could make decisions for himself. We wanted to give him the dignity and grace he deserved for his final couple of years.” He died in October 2015 at age 74.

Creating such a culture is much harder than it looks, Tolle and Teno argued. Oregon has successfully integrated awareness of end-of-life care at all levels, from state government and emergency care to individual decisions made by patients and their doctors.

“If patients’ goals are not linked to actionable care plans that are supported by local health care systems and state regulations, many patients who wish to remain at home will die intubated for all the reasons the current system fails them,” they wrote.

Across the US, there’s been a push to promote ways to indicate end-of-life treatment preferences, including advance directives, which provide guidance for future care, and Physician Orders for Life-Sustaining Treatment, or POLST, portable medical orders authorizing current care. Twenty-two states now have POLST programs and others are working on or considering them, said Tolle, who co-led the creation of POLST in the early 1990s.

But the researchers warned that, while POLST efforts are important, simply filling out the forms is not enough.

“We were highlighting that there’s no simple answer,” Tolle said. “You can’t just do one thing and think that you will change the culture of end-of-life care. It is a whole lot of work.”

Dr. Scott Halpern, a medical ethics and health policy expert at the Perelman School of Medicine at the University of Pennsylvania, has been a chief critic of POLST efforts, contending that there’s little evidence that the medical orders improve quality of life near death.

The new analysis by Tolle and Teno doesn’t fill the gap, he said. But he agreed with the authors’ contention that a focus on single interventions ignores the complexity of end-of-life decisions.

“Good end-of-life care involves physicians eliciting patients’ values, hopes and fears and making treatment decisions that align,” Halpern said.

The new analysis, which was funded by a grant from the Robert Wood Johnson Foundation, underscores that families and patients outside of Oregon must be vigilant to ensure they receive the care they want, Tolle said.

“The level of care you receive near the end of life depends more on the state you live in and the systems they have in place than your actual wishes,” she said.

Complete Article HERE!

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Talk about death, be kind and trust your instincts: tips for new nurses

NHS nurses offer advice on when to question doctors and how to deal with patients you don’t like

‘Good nurses are really tuned into their gut instinct and new nurses should learn to trust it.’

Don’t be afraid to question senior doctors

Never be scared to question a doctor, however senior they may be. We are our patients’ advocates and can protect them from potential mistakes. A good doctor will respect you for this. If you feel something isn’t right but are not confident enough to challenge a situation yourself, go to someone you know, trust and respect – watch how they deal with it and learn.
Emma McLellan, staff nurse in the ICU, Manchester

Learn to trust your gut instinct

I believe good nurses are really tuned into their gut instinct and new nurses should learn to trust it. A nurse’s gut instinct is their deeply grounded knowledge base developed in practice, their critical awareness and what they have learned from previous situations plus an overall sense of knowing the patient well. You’ll just know something doesn’t add up, or you may convinced there’s something more going on, so make sure you go that extra mile to cover all bases. Maybe, for example, all of a patient’s baseline observations are normal, but you just sense that there is still that underlying thing you can’t put your finger on – monitor them really closely because you’ll often be right.
Zoë Hartwright, community mental health nurse, Shropshire

Death is a part of nursing – talk about it with patients

Death is a regular part of nursing. Patients need someone to talk frankly about death. We plan births for nine months, but talking about death always seems awkward and hard. One of the best things you can do for a patient who is nearing the end of their life is to give them opportunities to talk about their death and how they would like it to be. Being able to give advice and support to help them get their affairs in order can relieve a lot of their pain and worry. It is possible to have a good death but the conversations have to be had.

When death is unexpected this is very hard to deal with. I worked in an accident and emergency department for 10 years and learned that life and death is unpredictable. I have seen many patients and nurses struggle with the last words that they said to that person, so I try to adopt the approach of being kind. Really think about what you say during emergency situations – it is likely that patient can hear you right to the end – even if the rest of their body is not responding. Use their name, talk calmly to them, explain everything you do as you are doing it. Speak to them as if they are awake.
Christine Bushnell, advanced nurse practitioner, nurse partner in a GP surgery and trainer, Harrow

Be kind to patients’ relatives

It’s very hard not to take it personally when relatives are difficult with you. As a nurse in paediatrics, I found it tough at first as a newly qualified nurse without any children of my own. Now that I am older and I have my own children, it is different. When dealing with emotional or difficult relatives, try to put yourself in their position and understand that they do not have anything against you – they are just desperately worried about their child, for example, and you may be the nearest person to them and so they might take it out on you. It is important to listen without judging and, if treated with hostility, try to respond with kindness. Speak to your manager if certain behaviour from a family member is bothering you, but ultimately try to be understanding.

Don’t say, “I know how you feel” when you have never been in that situation. Instead you can say something like: “I can’t begin to imagine how worried you must be, but we are doing everything we can, if you have any questions please ask and if I can’t answer them I will find someone who can, etc”.
Sally al-Habshi, paediatric emergency nurse, Leicester

Be nice to healthcare assistants

Always be nice to healthcare assistants, they’re amazing. Make lists of jobs you need to do – a good list helps everything. And always remember that when you’re having a bad day, your shift will come to an end and you can go home and eat pizza.
Laura Thompson, ward manager, London

Complete Article HERE!

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Soul midwifery – ‘Midwives’ of mercy

The new breed of inspirational carers helping to ensure people’s dying days are spent in the comfort of their own homes

By Jane Feinmann

[C]olin Barber takes great comfort in the fact that his terminally ill wife, Valerie, was able to die peacefully in her own bed.

On Tuesday, September 1, 2015, ten days after she had been discharged from hospital, Valerie, who had bile duct cancer, took her last breath at home in their bedroom — ‘exactly as she had wanted, with her father and me on each side of her bed, gently holding her hands’, recalls Colin, 56, a business psychologist.

It was, he says, as serene a death as it could have been.

Yet it was nearly so very different. Instead of spending her last few days in peace at home, Valerie, like many patients, could have ended up being rushed to hospital and dying on an anonymous, noisy ward.

But she was one of the lucky ones: she was able to plan for her last days and ensure her wishes were adhered to, thanks to an award-winning new approach to end-of-life care known as soul midwifery.

The idea is that, just as a birth midwife helps to ease a baby’s entry into the world, a ‘soul midwife’ eases people’s dying days.

It is a cruel failure of modern medicine that while the vast majority of people — eight out of ten, according to the Office for National Statistics — want to die at home with their symptoms controlled and their loved ones around them, nearly half actually die in hospitals. Only one in five gets to die at home.

And just how ghastly dying in hospital can be was set out in a report by the British Medical Association published last March.

Based on interviews with more than 500 doctors and patients, it painted a grim picture of patients being given ‘entirely inappropriate invasive treatments’, and junior doctors often too fearful to provide adequate pain control.

Pressure on beds can mean dying patients are ‘shuffled between wards’, preventing continuity of care, while single rooms are prioritised for patients who pose an infection risk, so the dying rarely get privacy. The NHS failure to provide a dignified, peaceful death was highlighted this month by a study published in the BMJ’s Palliative and Supportive Care journal, which identified a postcode lottery in specialist palliative care.

As a result of this, patients are far more likely to be rushed to A&E at the end of their lives than to die pain-free, in peace, at home.

NURSES HAVE NO TIME TO CARE
The BMJ report followed a recent survey of almost 1,000 hospital nurses in which two thirds revealed they didn’t have enough time to care properly for dying patients.

Such is the concern that patients are being failed, that last week the National Institute for Health and Care Excellence (NICE) re-published guidance on end-of-life care first issued to doctors in 2015.

This restated four essentials: the need for doctors to draw up a care plan, provide individualised symptom control, monitor patients daily and ensure adequate hydration. Most people, says Professor Gillian Leng, deputy chief executive of NICE, receive good end-of-life care ‘but this isn’t always the case’.

End-of-life champion: Felicity Warner established soul midwifery in 2004

Good care involves asking people about their preferences as well as controlling pain, adds Sam Ahmedzai, a retired professor of palliative care who worked on the latest NICE guidance.

Yet a recent study showed that only one person in seven who could communicate their desires had those wishes documented.

This is far from a new problem. Ten years ago, a major report, the End of Life Care Strategy, featured an innovative plan to end the situation where ‘most people would prefer to die at home while only a minority manage to do so’, as then Health Secretary Alan Johnson put it.

Along with improved palliative care, the plan involved healthcare practitioners working harder to ‘identify people approaching the end of life and discuss with them their needs and preferences’.

DOCTORS CAGEY ABOUT THE TRUTH
Ten years on, although there has been a slight improvement (back then nearly six out of ten people were dying in hospital) there is still ‘a long way to go’, Claire Henry, chief executive of the National Council for Palliative Care, told Good Health this week.

So why is it still proving so difficult to get things right?

‘Some deaths happen suddenly, out of the blue, while with some patients it’s difficult to be sure whether they are dying or will recover,’ says Professor Ahmedzai.

‘That’s why we say that every patient in the last days of life should be monitored daily in case there have been changes and there is a chance of recovery.’

Research shows that, in fact, in four out of five cases GPs can predict which of their patients will die within the next 12 months. And three out of four deaths are anticipated by medical teams, according to NICE.

Professor Ahmedzai says: ‘We should be asking anyone admitted to hospital with a serious illness about their preferences for where and how they wish to die, should that look likely. But doctors often don’t because they are embarrassed or just too busy to handle that conversation. It can’t be an excuse. We must make time for the dying.’

Indeed, a major problem is that too often, dying patients simply are not told what their doctors know. Sometimes this is because doctors are unwilling to discharge patients so they can die at home because effectively ‘such a decision can be seen as an acceptance of failure’, the recent BMA report noted.

Research shows that in four out of five cases GPs can predict which of their patients will die within the next 12 months

Certainly, no one told Valerie or Colin that she was dying.

The banking relationship manager from Brentwood, Essex, had cancer diagnosed in 2013, two weeks after her 50th birthday, after noticing that the whites of her eyes were yellow.

Her GP referred her for an MRI scan, which revealed a large tumour wrapped around her bile duct.

She had surgery to remove part of her liver along with the gall bladder and bile duct, followed by three months of chemotherapy.

‘After the treatment we began to be optimistic that she was recovering,’ says Colin. But in October 2014 a scan identified nodules of cancer in the liver, too scattered to be removed surgically. In August 2015, Valerie took a sudden turn for the worse and had to be admitted to hospital.

‘We’d just come back from holiday, when she’d canoed 15 miles down the River Severn,’ recalls Colin. ‘Then one day she woke up so weak she could barely stand.’

Even so, ‘it didn’t occur to me that she was gravely ill,’ he recalls. ‘No one at the hospital mentioned the word ‘dying’.’

Valerie’s discharge from hospital three days later depended only on a physiotherapist checking that she could walk upstairs, which the couple took to mean she was on the mend.

‘But looking back on it, her doctors must have been aware that she was dying,’ says Colin. Not least because the next day, after an appointment with the cancer specialist, she was referred to hospice care.

It was not her doctors but Valerie herself who first put what was imminent into words. ‘Back at home, Valerie told me she was dying and I had to accept it,’ recalls Colin. That was when she asked him to be her soul midwife, ensuring her dying days were as she wanted them.

CARERS TO EASE THE LAST DAYS
Soul midwifery is a unique approach to end-of-life care.

In the words of Felicity Warner, the woman who founded it, ‘just as a birth midwife ensures a safe delivery into this world, the soul midwife’s role is to do the same for the dying, to make a good death possible, a dignified, peaceful and even enriching experience’.

This means ‘providing comfort, continuous support and reassurance’ — in practice, after a terminal diagnosis, this involves helping to support the patient as they make an end-of-life plan.

In the final stages the soul midwife might sit by the dying person, holding their hand, playing soothing music and burning appropriate oils. Krista Hughes, a soul midwife based in Chertsey, Surrey, works privately in people’s homes but is often called to a hospice, she says, to work with those with ‘terminal agitation’.

It is a term recognised by clinicians and often managed with sedatives, but as a soul midwife, she prefers gentle breathing, maintaining eye contact and softly repeating the person’s name.

The work of soul midwives was recognised when Felicity Warner was named 2017 End of Life Care Champion by the National Council for Palliative Care and the Royal College of Nursing. The seed for soul midwifery was planted more than 20 years ago when Felicity, now 58, was working as a journalist and interviewed several women dying of breast cancer.

The women told ‘how lonely it felt to be dying despite their medical care and their families around them’.

Not only were their doctors and nurses too busy to talk about death and dying but, surprisingly, Felicity found the women were becoming increasingly distant from friends and family who couldn’t cope with the reality and masked it with platitudes such as: ‘You’ll be feeling better soon.’

Researching how people died before the rise of modern ‘curative’ Western medicine, Felicity found a range of practices ‘that had in common the fact that they respected the act of dying as a sacred time’.

She established soul midwifery in 2004, and has since trained 600 soul midwives — many already have a health practitioner qualification — with an initial three-day course, followed by an apprenticeship lasting around a year.

Qualified soul midwives’ costs are in line with local rates for services such as counselling, though many also work as volunteers at hospices or use the qualification to help care for a terminally ill relative.

Valerie herself had attended a three-day soul midwives’ course shortly after recovering from the cancer surgery in August 2014.

‘It was something she thought she would like to do one day when she was stronger,’ recalls Colin.

So when Valerie told him she thought death might be near, he asked if she wanted him to contact the organisation to arrange for a soul midwife to visit.

Instead, she told him to read her copy of the soul midwives’ handbook so he could take on the role.

For Colin, this meant as well as ensuring Valerie’s comfort, he was her gatekeeper.

While many people want strong intravenous pain control in their last days, Valerie didn’t — ‘she wasn’t in much pain and wanted clarity of thought to the end, yet it took time and effort to stop the palliative care team administering the sedatives,’ says Colin.

‘I had to contact Valerie’s GP and get him to approve her decision, then inform the hospice nurses.’

Three days before she died, the couple celebrated their 17th wedding anniversary. ‘We wrote cards for each other and exchanged presents. The next morning, Valerie told me she had stayed for our anniversary and now she was ready to go. It was her time to die.

‘She had told me she wanted to imagine she was floating away on a boat and asked me to play soothing background music. I lit candles and used essential oils.

‘She had also warned me that the last sense to go would be her hearing, so I read prayers and spiritual affirmations.’

Soul midwifery will not be for everyone. But Colin is in no doubt that it helped Valerie to a comfortable and tranquil death.

‘Of course I longed for a last-minute reprise, a miracle recovery that would keep her with me. But I recognised that Valerie knew what her body was telling her, and did my best to concentrate on our time well spent together. I’m certain she knew that, and appreciated it.’

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