More than 40% of GPs have accompanied terminal fasting

Most respondents said accompanying someone during terminal fasting was compatible with their professional ethics

Four out of ten family doctors in Switzerland have dealt with at least one patient who refuses all solid or liquid food in order to die, according to a study. Most doctors have a positive approach to the issue.

The Zurich University of Applied Sciences (ZHAW), in collaboration with the Swiss Medical Association, conducted a representative survey of 750 practising family doctors in Switzerland on the voluntary stopping of eating and drinking (VSED), also called ante-mortem or terminal fasting.

VSED is the act of a person who consciously refuses to eat or drink with the intention of dying. Healthcare professionals are therefore not charged with providing a lethal drug to the patient but rather with caring for and accompanying the patient from the beginning of VSED until her or his death.

The survey found that 81.9% of family physicians knew about VSED and 42.8% had accompanied at least one patient during the process. On average, doctors with experience of VSED had dealt with 11 such cases.

“We didn’t expect such a high number,” says Sabrina Stängle, co-author of the research at ZHAW. She pointed out that Switzerland still lacks a unified practice in this area.

“Family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process,” the researchers concluded. “Further training and development of practice recommendations are needed to achieve more standardised accompaniment of VSED”.

Stressful

In any case, 59% of the doctors questioned saw VSED as a natural death process when overseen by a healthcare professional; 32% defined it as equivalent to passive euthanasia, 5% regarded it as suicide, 2% considered it a self-determined end-of-life decision and 1% as an alternative form of dying. One per cent of physicians said they would classify VSED differently depending on the case, which would also be based on the patients’ motives and physical health.

Almost three-quarters of respondents (73%) said this assistance was compatible with their worldview or religion, 58% with their professional ethics; 24% said it contradicted their ethics and 18% were neutral. Those who have already been confronted with it are generally more favourable.

That said, more than half of the respondents said accompanying a person during VSED was stressful.

Complete Article HERE!

Hospice Workers Share What They Wish Everyone Knew About Death

By Emily Laurence

When Daniel Lynn tells people he’s a hospice volunteer, he says they usually respond by asking him a question: Why? American culture tends to be put off by anything related to death; it certainly isn’t a welcome topic at a party or around the dinner table. “People ask me why I would want to spend my time doing something so sad, but I find it incredibly rewarding and meaningful,” Lynn says.

Palliative care physician Christopher Kerr, MD, PhD, has gotten similar responses when he tells people about his occupation. Dr. Kerr started working in hospice care—a type of health care focusing on managing a terminally ill patient’s pain and symptoms, as well as their emotional and spiritual needs at the end of life—to supplement his income as a doctor. Up until that time, Dr. Kerr’s job only focused on one outcome—saving patient’s lives—so he admits that he wasn’t quite sure where he would fit into a health-care space where death was imminent. “When I first started, to be honest, I didn’t think there would be much for me to do,” he says. “As a doctor, you’re taught that death is the one thing to avoid.”

The years Dr. Kerr has worked in hospice care, treating thousands of people who are dying, have made him see the dying process in a whole new way. “Death is not a sad experience for everyone,” Dr. Kerr says. His book Death Is But a Dream shares stories of patients he has cared for in hospice, showing that dying is much more than suffering. It can be a time when many become emotionally awakened, and there can be levels of comfort and peace that can’t be explained by science.

This year, of course, death has been on our collective minds more than ever due to the pandemic. It’s devastating to lose a loved one—to COVID-19 or otherwise. But hospice workers offer special insight into what’s often overlooked when we talked about dying. And with their observations comes something we all collectively need right now: healing.

How relationships can change when death is imminent

Lynn became a hospice volunteer in 1985, after both his wife and father died of lung cancer. “My current wife and I are both hospice volunteers in Williamsburg, Virginia,” he says. “And we have two Bernese mountain dogs who work as therapy dogs with us in the hospitals and nursing homes.”

Lynn doesn’t deny that losing a loved one is extremely heartbreaking. “When my first wife was dying of lung cancer, I grieved deeply,” he says. Experiencing the need for comfort during this difficult time in his life was part of what inspired him to be there for others.

Just as people live in different ways, people die in different ways. But something Lynn has noticed in his work is that dying patients often prioritize relationships in a way they didn’t earlier in their lives. “Something I often see is that many people want to make amends and improve relationships that have been damaged,” he says. Family members who haven’t talked in years may start communicating regularly. Grudges are dismissed, replaced by forgiveness and peace.

Angela Shook works as a death doula, a trained professional who supports someone at the end of their life. She’s also seen how important relationships become at the end of life. “Many of the people I’ve worked with have a fear that they’ll be forgotten, so something we often do is a legacy project, which is a way of helping friends and family remember them [after they die],” she says. “One woman I worked with was known in her family as this amazing cook. Everyone loved her food. So for her legacy project, we made a cookbook of her recipes that all her children could have. And we used her old clothes to make an apron for her daughter. It was extremely meaningful to her, and also to them.” In these ways, a death doula can help make saying goodbye easier for both the dying and the living.

Experiencing comfort unexplained by science

While many people equate death with suffering, Dr. Kerr says something that has surprised him the most about working in hospice is the peaceful visions that often come in a person’s final hours. He says 88 percent of his hospice patients report seeing visions as they die. Often these visions—vividly real to the person experiencing them—are of people who have died before them, and they provide a great sense of comfort, peace, and even joy.

Dr. Kerr adds that dying children often see pets who have passed away. “Children don’t have the same language that we do to talk about death, but the visions they describe give them a sense that they are loved and that what is happening to them is okay,” Dr. Kerr says.

He cannot offer a scientific explanation for these phenomena. “There’s this assumption that people have these visions because their brains are changing, becoming deoxygenated, or they are medicated and confused, but that’s not the case,” he says. “We know that by looking at the brain; it’s not changing biologically or functionally. I think people are changing very much spiritually.”

“To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.” —Angela Shook, death doula

Shook says many of her clients have also had visions. She and Dr. Kerr say it’s something that happens regardless of religious or spiritual beliefs; even those who don’t believe in a higher power or an afterlife can experience visions. “I would estimate visions are part of about 90 percent of the deaths I’ve been apart of,” Shook says. “One 83-year-old woman I worked with had been feeling very agitated for the three days. But when I walked into her room one day, she had a peaceful smile on her face. I looked over at her and she was rocking her arms, as if she was holding a baby.” The patient died shortly after that, and Shook shared what she saw with the patient’s son. “He told me that his mom’s first daughter had been a stillborn and she had often said that she couldn’t wait to see her daughter in heaven one day,” Shook says. “To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.”

Not everyone, though, has happy visions. In his book, Dr. Kerr says his research has found that in 18 percent of his patients who have visions, they are more like nightmares. “There seems to be a correlation between people who have had very traumatic experiences in life or a lot of regret [and experiencing negative visions],” he says.

Of course, it would be unfair to paint everyone’s end of life experience as peaceful and uplifting. The truth is, death is sometimes accompanied by pain and suffering, both physical and emotional. “Often, people have a question of ‘why me?’” Lynn says, adding that some are angered by what’s happening to them. It seems death, like other stages of life, isn’t all good or bad. Still, few people talk about the moments of peace—and even joy—in the process, and that’s what Lynn, Shook, and Dr. Kerr hope to shed light on.

“Becoming a death doula and spending time with the dying has been the greatest, most beautiful gift of my life,” Shook says. “It’s strengthened my belief that there’s more beyond what we can see.”

What hospice care has looked like during COVID-19

Both Dr. Kerr and Shook say their jobs have changed tremendously during the pandemic, and have caused them to think even more about the importance of end-of-life care. “Our work in hospice and palliative care has become invaluable during the pandemic,” Dr. Kerr says. He adds that, for him, working during the pandemic has been a struggle as the way he works has changed tremendously. “Personally, I feel a bit lost,” he says. “My work is most meaningful when defined by direct interpersonal relationships with patients, families, and colleagues.” But as hospitals and care facilities tightly restrict visitors to reduce the spread of COVID-19, cultivating those relationships is extremely difficult.

Shook says she feels her work has become more vital than ever in helping loved ones find avenues of closure. “Many have lost loved ones and been unable to mourn at a service or traditional funeral because of social distancing restrictions,” she says. “It is so important to take the time to grieve and realize that grief looks different for everyone.” Since, for many, attending a funeral isn’t a possibility right now, it can make finding other ways to say goodbye—such as through a legacy project—especially meaningful right now.

“Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace.” —Christopher Kerr, MD, PhD

Shook says she has still been providing her services as a death doula virtually, as meeting in person with families is not currently possible. “Many facilities and hospices in which many doulas work have restrictions on visitors. During this time, doulas [like myself] have been offering virtual support through web conferencing, calls, letters, FaceTime, and more,” she says. “With so many being isolated, doulas are more important than ever and can still support the dying and their loved ones from a distance.”

Dr. Kerr says that many family members of his patients have expressed devastation and sadness at not being able to be physically present for their loved one’s final moments. He sympathizes with this sentiment, but offers up some words of comfort. “The dying process includes altering levels of alertness and progressively deeper sleep, and include vivid pre-death dreams,” he says. “[In their final days], the majority of patients see not tubes or monitors but the faces of predeceased loved ones. They revisit the memories of being held and cherished, the apotheosis of a life rather than its demise. They teach us that the best parts of having lived are never truly lost.”

This, he says, reveals something important about the dying process, whether it’s during a pandemic or not: “The totality of our human experience can never be defined by or reduced to its last moments,” he says. “Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace. The dying often experience a summation of their life’s best moments and they leave us feeling more connected than alone.”

Complete Article HERE!

What Happens As We Are Dying?

The First And Last Things To Go

Knowing what happens when we’re dying can tell us how to console colleagues and loved ones as they lose their battle with COVID-19.

By

As our mother lay dying, my sister and I sat on either side of her, holding her hand and whispering words of comfort until the hospital machine showed a flat line. Having heard that physicians often witness positive reactions in patients when loved ones speak to them in their final moments, we intuitively thought that perhaps she could hear us. No one knows for sure what happens as we die, but recent information from neuroscientists shows that our intuitions could be right. Knowing what happens when we’re dying can tell us how to console colleagues and loved ones as they lose their battle with COVID-19.

The Last Thing To Go

In the last hours before an expected natural death, many people enter a period of unresponsiveness, during which they no longer respond to their external environment. Anecdotal reports from near-death experiences commonly include stories of the dying person hearing unusual noises or hearing themselves pronounced dead.

In a June 2020 groundbreaking study published in Scientific Reports, neuroscientists provided the first empirical evidence that some people can still hear while in an unresponsive state hours before dying. Using EEG indices, neuroscientists at the University of British Columbia measured the electrical activity in the brain from hospice patients at St. John’s Hospital when they were conscious and when they became unresponsive. A control group of young, healthy participants was also used. The researchers monitored brain responses to tones and found that the auditory systems of the dying patients responded similarly to the young, healthy control groups just hours from the end of life. They concluded that the dying brain responds to sound tones even during an unconscious state and that hearing is the last sense to go in the dying process.

The First Thing to Go

Many people who have had near-death experiences describe a sense of “awe” or “bliss” and a reluctance to come back into their bodies after being revived. I interviewed brain scientist Dr. Jill Bolte Taylor, who described having a strikingly similar awe experience during her stroke which she detailed in her book My Stroke Of Insight.

Jill Bolte Taylor: I was bouncing in and out of the consciousness of my right brain. The left brain had the hemorrhage, growing at an enormous rate over those four hours. By the time I got to the hospital, the hemorrhage was about the size of my fist in my left hemisphere. Over the course of the morning, I drifted into blissful euphoria, the consciousness of my right brain. And then I would come back online and attend to the details to get myself help. It was a movement in and out of being aware of external reality. I was completely conscious through the entire experience, but only at some point could I attend to detail in the external world, recognize that it existed, or even care.

Bryan Robinson: So the fear factor wasn’t there?

Taylor: I was very blessed. I had zero fear. I was there in blissful euphoria in the right brain. Or I was in the left brain, preoccupied with trying to figure out what I needed to do to orchestrate a rescue.

Robinson: How did the stroke change your outlook on life? Or did it?

Taylor: One hundred percent. It shifted me away from believing that I was the center of my world and that “me and mine” is what matters. That whole circuit—the consciousness of me as an individual—went offline. In the absence of the focus of my life being me, I shifted into a consciousness and awareness that I’m a part of a greater humanity. I’m more open, expansive, and flexible to possibilities—as opposed to “here’s what I want and these are the steps I’m going to take to get what I want.” I function inside of a hierarchy of people above me and below me and I’m climbing a ladder. So I shifted away from the linear way of looking at the world and my relationship to it. I live more open to the possibilities of what can be and what is the best match for me.

Robinson: Is it true that your training and professional and personal experience have led you to believe that the right brain or authentic self is the brain hemisphere that endures even at death?

Taylor: The authentic self is the part of us that I firmly believe shows up in the last five minutes of our lives. When we’re on our deathbed, the left brain begins to dissipate. We shift out of all the accumulation and the external world because it’s no longer valuable. What is valuable is who we are as human beings and what we did with our lives to help others. We all face it, and I think that is judgment day. But I don’t think it’s the judgment of something beyond us; it’s the judgment of ourselves. Those of us who are tangled up in the external judgment are not slowing down enough to reflect on the essence of who we are as human beings and what we could be in connection with one another.

Steps You Can Take

It’s important to be supportive, compassionate and understanding in cases where a coworker loses their battle with COVID-19. Don’t hesitate to reach out to other bereaved colleagues, share your concerns and be willing to listen. If you’re an employer, make sure HR personnel are well educated about the process of death and dying. If you are an employee in an organization where COVID-19 deaths haven’t been acknowledged or discussed, speak to someone in authority who can take steps to provide training for all employees. Appropriate information makes sure employees receive emotional support during the loss. Otherwise social isolation can cut employees off from help when they most need it.

Now that hearing is widely thought to be the last sense to go during the dying process and that a blissful experience might replace fear, this information might be helpful to bring comfort to family and friends in their final moments. Perhaps being present with comforting words in the last hours in person or virtually can console the dying as well as loved ones. According to Dr. Elizabeth Blundon, lead researcher in the Scientific Reports experiment, “This is consistent with the trope that hearing is one of the last senses to lose function when a person is dying and lends some credence to the advice that loved ones should keep talking to a dying relative as long as possible.”

Complete Article HERE!

Comedian Laurie Kilmartin Live-Tweets Her Mom Dying of COVID-19 With Humor and Grace

By

Laurie Kilmartin is a stand-up comic and longtime writer for Conan O’Brien. When her dad was dying in 2014, she live-tweeted his hospice care with an incredible sense of humor. After he died, she released a comedy special called, 45 Jokes About My Dead Dad, a tender and hilarious special that tackles the issues of dealing with death and dying head-on. Later, she wrote a humorous book about death and grief called, Dead People Suck: A Guide for Survivors of the Newly Departed.

On June 18, 2020, Laurie’s mom died after a short and intense battle with COVID-19. And for a week or so before, Laurie live-tweeted the whole experience of spending her mom’s last moments with her on an iPad. Her tweets are equal parts hilarious and heartbreaking, not to mention full of righteous anger about the COVID-19 crisis and the way some people are denying it’s an issue.

The sense of humor with which she was able to approach the situation is so admirable, and the vast majority of people were extremely supportive. Still, Laurie had to deal with some snide comments from persnickety people in her mentions.

“I hope she doesn’t see your Twitter account,” one person wrote, speaking about Laurie’s mom. “She won’t, because she’d dying,” Laurie simply responded. 

For several days, Laurie and her sister sat with their mom on FaceTime, connected through an iPad. Her mom had entered a skilled nursing home for a bad hip injury, and it was there that she contracted COVID-19. 

“When we knew we had to put her in one for strength building, they’re all closed or they all have had COVID outbreaks, so they’re not taking any people,” Laurie told ABC7. “I was given two options, and one was an hour away and one was kind of close. And I picked the close one, and they had a COVID outbreak.”

“The day after mom entered her nursing facility, there was one case of COVID,” Laurie tweeted. “I just called, now there are 50 cases of COVID associated with this facility, employees and patients. Ten days later. This is Highland Park, in Los Angeles.” In another tweet, she wrote, “Thinking I should have sent my mom to recover at a meat-packing plant instead.”

She and her sister fought extremely hard to get to visit their mom. The hospital she was being treated at stopped allowing visitors because of the pandemic, but Laurie rallied friends and fans to contact the hospital, and eventually, they modified their rules. Laurie and her sister were able to spend about an hour with her mom on the Monday before she died.

The rest of the time, they were stuck on the iPad. Much of Laurie’s very understandable anger about her mom’s death on Twitter has been directed at those who still refuse to wear masks to help prevent the spread of the virus, notably, former baseball played Aubrey Huff.

He tweeted saying that he would no longer wear a mask inside any business because “it’s unconstitutional to enforce.” Laurie wryly responded that she was in the midst of watching her mom die of COVID-19 and that “her bed will be ready for you in 12-24 hours.” She then posted an update once her mom had passed that just said, “The bed’s available.”

Laurie lamented that even after her mom died of COVID-19, she still has family members who believe that the mandate to wear masks in public is “unconstitutional.” Wearing masks has been proven as an effective way to protect communities from the spread of COVID-19. 

It’s a simple, easy thing to do to protect others, and anyone who isn’t willing to is saying that they just don’t care about other people. “In lieu of flowers,” Laurie tweeted after her mom’s death, “the family asks that you throw hot coffee on the face of anyone not wearing a mask.”

Complete Article HERE!

“I’m letting her down by seeing her suffer:”

managing a cancer home death during the pandemic

What is it like to care for someone you love who is dying from advanced cancer at home during lockdown?  Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver

One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:

In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.

The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comforta slow death is not comfortable for anyone no matter how you sugar-coat it.

Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.

I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion.  It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.

I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick.  Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.

Alan’s complex feelings about being in charge of controlled medications do not appear to be singular.  A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.

How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?

With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.

How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.

In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?

Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication.  It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]

A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.

I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.

I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.

The next morning, I check my phone. Mum died at 3.45am.

I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral.  I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?

The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.

Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.

Complete Article HERE!

When life support is withdrawn, commitment to care must not end

By Timothy M. Smith

Physicians caring for the sickest patients with COVID-19 sometimes have to make the difficult decision to withdraw life-sustaining treatment. However, that painful choice does not obviate a physician’s obligation to provide supportive care to dying patients thereafter.

The AMA has created an ethics resource page, “Caring for patients at the end of life,” that offers expert advice on the ethical and emotional challenges involved. Citing numerous opinions from the AMA Code of Medical Ethics, the page provides a comprehensive guide to eliciting and following patients’ wishes for how they want to die.

More broadly, the AMA and the Centers for Disease Control and Prevention are closely monitoring the COVID-19 pandemic. Learn more at the AMA COVID-19 resource center. Also check out pandemic resources available from the AMA Code of Medical Ethics, JAMA Network™ and AMA Journal of Ethics®, and consult the AMA’s physician guide to COVID-19.

A transition, not an end

“A decision to withhold or withdraw life-sustaining treatment is not a decision to withhold or withdraw care entirely,” the page says. It goes on to quote the Code opinion on “Withholding or Withdrawing Life-Sustaining Treatment,” which requires that physicians reassure “the patient and/or surrogate that all other medically appropriate care will be provided, including aggressive palliative care, appropriate symptom management if that is what the patient wishes.”

Citing the same opinion, the page notes the emotional toll this process takes on everyone involved and recommends establishing the patient’s preferences and setting specific goals for care.

Ideally, patients will have already expressed their end-of-life wishes to their physicians or their surrogates. Often, though, patients haven’t given much thought to the care they will want or not want at the end of their lives. In those situations, per the Code, physicians should “elicit the patient’s values, goals for care, and treatment preferences” and capture those preferences in the patient’s medical record.

If the patient lacks decision-making capacity, the resource page notes, his surrogate may make health care decisions on his behalf.

Read the Code opinion on surrogate decision-making.

Understanding advance directives

If, however, the patient has an advance directive, the preferences set out in the directive should govern care decisions.

“Some physicians think advanced directives are only useful for declining care. They’re not. You can say what you want,” said Elliott Crigger, PhD, director of ethics policy at the AMA. “Now, you may not get it—there may be reasons why it won’t work—but you can say what you wish and how you want to die. And that includes either declining care or asking for care.”

There’s a similar misunderstanding around do-not-resuscitate orders, Crigger noted.

A few physicians may wrongly interpret a DNR order as a sign that the patient also is less interested in other supportive care. “But that’s not what it means,” Crigger said. “It means, ‘Don’t resuscitate me.’ It doesn’t mean, ‘Don’t provide every other kind of supportive care you can.’”

Read the Code opinions on advance care planning and the use of advance directives.

When sedation is appropriate

“When it proves impossible to adequately manage symptoms despite vigorous palliative care efforts, for some terminally ill patients an option of last resort is sedation to unconsciousness,” the page says.

Referring to opinion 5.6, “Sedation to Unconsciousness in End-of-Life Care,” the resource page notes that physicians should reserve this option for patients in the final stages of terminal illness and “ensure that options for appropriate, symptom-specific palliative care have been exhausted, ideally in consultation with a multi-specialty team,” adding that the patient or his surrogate must give informed consent before sedation is administered and the decision should be recorded in the patient’s medical record.

Read about a score-based framework for determining priority access to ventilators and other scarce resources.

Complete Article HERE!

Death, one day, is inevitable. Suffering should not be.

A temporary hospital at the Javits Center in New York on March 27.

By Sebastian Mallaby

About a month before the coronavirus pandemic engulfed us, my mother understood that she was dying. She had cancer. She had struggled to swallow food and maintain her weight. She was so light that I could lift her like a 12-year-old. On her firm instructions, the ambulance we children had arranged to take her to the oncologist was rerouted to a hospice. There, she received tender and expert end-of-life care. After four days, she died: peacefully, without pain, and with her family around her.

Today, this memory feels weirdly distant. In Italy and Spain — and soon in other countries — patients are dying in opposite conditions to the ones my mother experienced. They go to hospitals hoping for treatment. But, for lack of ventilators, some of them die gradually, alone. Visits from loved ones are often prohibited.

The flood of commentary on the pandemic focuses, correctly, on how to reduce fatalities. But we should also consider how to ease the loneliness and pain of those deaths that are inevitable. No one wants to die slowly in a medical hangar, cut off from family and friends. Rather, most want something as close as possible to what my mother had. They want to choose their own balance between prolonged life and prolonged pain. They hope to have the right to reconsider their choices.

Of course, in the current crisis, the hospices cannot serve everybody, and infectious disease presents risks to caregivers that cancer does not. The imperative is, therefore, to give people the tools to manage death at home, as humanely and safely as possible. Yet this component of our response to the pandemic is missing. We have not grappled with the need to distribute morphine to those who are suffering, even if this is a risky course, as the opioid crisis makes obvious; once we have finally supplied our medical professionals with the masks and other protective gear they need, we need to do the same for family caregivers. But we do not discuss these things, because we are determined to resist death, not dwell on the question of how we might go about dying.

My mother’s last lesson to her children was that this obstinacy is mistaken. While I was vainly learning all I could about her treatment options, she was coming to terms with the reality she could feel around her liver. “No more abracadabra,” she told me fiercely, when I protested that it was too early to give up. She knew she would soon die, and she wanted a good death.

A good death requires lucidity, not magical thinking. Today, this means confronting the reality of overloaded hospitals, and being honest about their inability to help all those who are stricken. In Italy, doctors have had to perform a kind of triage normally seen in wartime: They allocate life-saving ventilators based on age and health status. The same has happened in Madrid, where hundreds queue to be admitted to emergency rooms. Countries such as the United States and Britain will be lucky to escape this fate. New York’s governor, Andrew M. Cuomo, has repeatedly sounded the alarm about the shortage of ventilators. “You’re going to be thousands short. Thousands,” he said on March 15.

Hospitals don’t like to talk about the terms of the triage. Like the rest of us, they prefer to focus on preventing death; they recoil from being explicit about when death might have to be accepted. As a recent article in the New England Journal of Medicine noted, the absence of clear guidelines burdens front-line clinicians, who are forced to make heart-rending choices — doctors in Italy have wept under the pressure. But the absence of clear guidelines also leaves citizens adrift. If you or I fall seriously ill, will we have access to a ventilator?

Last week, two medically connected relatives called me. Being well informed and 70, they both know they fall on the wrong side of any triage. They have therefore resolved that, if their lungs begin to fail, they will avoid going to the hospital. At 70 — even in their 80s — patients still have a good chance of surviving covid-19 at home. But if they do not, my relatives’ definition of a good death is to be together at the end, even at the risk that one will infect the other. All that they ask is access to the palliative drugs that will control the suffering.

Society should think about the millions of people who are not medical insiders, and who should be helped to understand the choices that may potentially confront them. No doubt if governments and hospitals made public their criteria for triage, people would be horrified. But at least they could decide whether to seek help at a hospital or remain in their own beds. And the medical authorities, having leveled with the citizens, could be more forthcoming about the help available at home. To anyone who has witnessed death, it would be a huge relief to know that at least the pain can be managed. Death will be inevitable for each of us, one day. Terrible suffering should not be.

Complete Article HERE!