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!

How COVID-19 Is Changing End-of-Life Care

Some hospice agencies have been reluctant to go into homes lately

Entrepreneur Mika Newton with his wife Nuray, his daughter Ava and his mom, Raija

By Sherri Snelling

It was a decision Mika Newton had been dreading, but he knew he needed to stop seeing his mom.

For nearly three years, Newton, an entrepreneur in cancer care advocacy and patient support with his startup xCures, had been taking care of his 79-year-old mother, Raija, who lives near him in Oakland, Calif. When his father passed away, Newton took over caregiving duties for Raija, who suffers from mid-stage dementia and was recently diagnosed with terminal lymphoma. As the coronavirus pandemic exploded in March, Newton’s wife, Nuray, a nurse at Concord Medical Center at John Muir Health, was treating the sudden influx of COVID-19 patients. That meant a halt in Newton’s daily visits to his mom to protect her from any virus transmission.

“I wasn’t able to see her for eight weeks which was hard. But we spoke on the phone every day and I had peace of mind she wouldn’t die alone, because we have full-time home care and hospice for her,” said Newton.

Hospice in the Time of Coronavirus

According to a 2019 National Hospice and Palliative Care Organization report, nearly 1.5 million Medicare beneficiaries currently receive hospice care, defined as compassionate care that replaces treatment for patients who have a terminal condition with less than six months of life expectancy.

However, a National Association for Home Care & Hospice (NAHC) survey conducted in May 2020 found that 95% of hospice agencies have had existing patients refuse visits due to fears of contracting the virus  And while two-thirds of hospice agencies are taking COVID-positive patients, they have lost overall clientele, forcing them to reduce direct-care staff. Some staff concerned about their own health and their families’ health are reluctant or even refusing to help any COVID-confirmed patients.

“The agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow.”

Rebecca Bryan, a journalist for Agence France-Presse based in Los Angeles, realized that hospice care can be a blessing when her father spent eight months in hospice in 2004. But things were different when her 89-year-old mother, Margie, needed hospice before passing away during the pandemic.

“Hospice is a wonderful program, but I never realized how hands on my mom must have been for my dad since I was only home the last month of his life,” said Bryan.

When her mother was recently diagnosed with late stage leukemia and given three to six months to live, Bryan spent two months in Dallas caring for her.

“Mom made a decision not to proceed with blood transfusions, so we secured hospice care for her at home,” Bryan said. But while the small agency in Dallas helped deliver a hospital bed and did an initial inspection, it refused to send any staff to Bryan’s mom’s home when she showed an elevated temperature.

“She had just tested negative for COVID in the hospital and because of her cancer, she had not been outside. She was only at home alone but the agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow,.” said Bryan.

Bryan said she and her sister learned how to turn her mom to avoid bed sores, put on adult diapers, administer morphine and other paraprofessional caregiving tasks without any instruction.

“That was hard, I wish we had more guidance, because you are constantly asking yourself, ‘Am I doing this right?’” said Bryan.

Hospice Telehealth

Robin Fiorelli, senior director of bereavement and volunteer services for VITAS Healthcare, a provider of end-of-life care, believes in-person hospice care can never really be replaced but that telehealth has become a solution to some hospice challenges during COVID-19.

“We can conduct a virtual tour of a home hospice patient’s living area so our nurses can assess whether a hospital bed, walker, patient lift or bedside commode should be delivered to the home,” said Fiorelli.

“COVID has magnified the strain on family caregivers, there is no relief.”

She also added that face-to-face conversations about goals of care are being replaced by video chats in which physicians, patients and family members explore care-related wishes and document difficult-but-necessary decisions about ventilation, do-not-resuscitate orders and comfort-focused care. This proves especially valuable for family members who live far away from the patient and who can be part of those conversations remotely.

The Centers for Medicare and Medicaid Services (CMS) has waived certain requirements for hospice care at home due to the pandemic, such as allowing health care professionals to recertify patients for another six months of hospice care via a telehospice visit, foregoing the mandatory two-week supervisory visit for home health aides and waiving the mandatory hospice volunteer hours, which normally have to meet 5% of total hospice hours delivered.

“COVID has magnified the strain on family caregivers. There is no relief,” said Vic Mazmanian, a dementia care expert who operates Mind Heart Soul Ministry to train faith-based organizations, provide support group services for senior centers and memory care communities and work with hospice chaplains.

“Not being able to take a loved one to adult day care or a senior center so you can get a break is accelerating the stress and impacting the health of caregivers,” said Mazmanian. “The 24/7 nature of hospice care, with most, if not all, the work being done by the family member without help from professionals or volunteers, is being derailed by the pandemic with many caregivers feeling increased anxiety, depression and loneliness.”

From Grief to Gratitude

Mika Newton feels he’s been lucky. In addition to the daily home care for his mom, hospice workers come three times a week. But now that he has resumed his visits, he realizes the stress of not seeing her regularly like before has taken its toll on both of them.

“She’ll ask me why I’m wearing a mask and get angry about it because she doesn’t remember what is happening in the outside world,” said Newton. “Or she’ll forget she has cancer and I have to remind her. I realized the cancer may be killing her, but the dementia is slowly taking her soul.”  

Rebecca Bryan advises family caregivers facing hospice for a loved one to ask a lot of questions such as, “If my loved one tests positive for COVID or has one of the virus symptoms, does that affect your ability to come care for them?”

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“In the beginning of the pandemic, many of our patients and their families did not want our professional staff coming into the home. But that has eased up more recently,” said Dr. Kai Romero, chief medical officer for Hospice By the Bay, affiliated with UCSF Health in San Francisco. “We’re proud that throughout this entire experience we have continued to provide needed end-of-life care to everyone on our service and we’ve kept our direct care workers safe with strict testing, PPE and other guidelines. Not one of our staff has tested positive for COVID-19, even though we have had twenty-seven patients who have had the virus.”

COVID-19 Sparks ‘The Talk’ For Families

When Next Avenue asked readers on our Facebook page how the pandemic has affected care for their loved ones, one shared that she recently lost her mom after home hospice care and worked hard to make sure COVID-19 wouldn’t be part of the end of her life.

“Eighty percent of people don’t make a will or have the family conversation about long-term care because they are afraid if they do, they will die,” said Scott Smith, author of “When Someone Dies — The Practical Guide to the Logistics of Death.” Smith, who is CEO of Viant Capital and sits on a hospice board, advises families to have “The Thanksgiving Talk” where older family members share not just their wishes but where all the important legal and financial documentation can be found. 

Mika Newton said losing his dad galvanized him and his brother, Timo, to get all his mom’s end-of-life plans settled now, while she’s still alive. “My mom was able to participate in the conversation. which I’m really grateful for. And my dad did a great job making sure she would be OK financially, so it wasn’t a huge burden. I’m glad we went the route with hospice, I feel at peace with it.”

Complete Article HERE!

How California doctors are fixing how we die

Doctors change life-ending drugs to ease the final hours

Dr. Lonny Shavelson

By

Modern medicine excels in ways to save a beating heart.

Yet hardly anything is known about how to humanely stop one.

Frustrated by the dearth of information about how to aid dying, Berkeley’s Dr. Lonny Shavelson is gathering data to guide other physicians through this new, important and sorrowful clinical frontier. Legalized in 2015, California’s End of Life Option Act allows doctors to prescribe life-ending drugs to terminally ill patients.

“We’re doing a medical procedure. And whatever is done in medicine should be done well, and consistently,” said Shavelson, 68, a UC San Francisco-educated former Emergency Room physician.

“Now we can tell patients: ‘We’re giving you the best protocol we have,’ ” said Shavelson, whose Bay Area End of Life Options medical practice has overseen 232 deaths. “And we’re getting better and better.”

When Californians passed the medical aid-in-dying law – inspired by Oakland’s Brittany Maynard, San Mateo’s Jennifer Glass and others who sought to end their suffering from cancer – voters assumed it promised them a neat Shakespearean-styled ending, like Romeo’s quick poisoning in Verona. That was the goal, but it didn’t always happen.

A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.

“The public thinks that you take a pill and you’re done,” said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. “But it’s more complicated than that.”

So Shavelson, in collaboration with Washington-based retired anesthesiologist Dr. Carol Parrot, set out to compile data to help doctors help their patients. At a UC Berkeley-based conference last February, they co-founded the American Clinicians Academy on Medical Aid in Dying. The Academy’s 240 clinicians are now contributing and sharing their own experiences.

Dr. Lonny Shavelson, of Bay Area End of Life Options, looks over data at his home office in Berkeley, Calif., on Tuesday, Feb. 18, 2020. Shavelson is leading a data collection project to learn what medications most quickly and gently bring the person to their requested death under the 2016 End of Life Options Act.

To each deathbed, seated with grieving family members, Shavelson brings a clipboard with drug names and dosage levels.

As minutes tick by, he measures falling oxygen levels, slowing cardiac rhythms and fading respiration. He tracks outcomes while providing care.

The pharmacologic findings, shared with clinicians nationwide, are dramatically reducing the incidence of long, lingering and wrenching deaths.

“It’s really helpful to have someone actually studying the utility of what it is we’re doing,” said Pasternak. “So much of what we’re doing has arisen empirically. He’s collected such great data.”

“Patients want a medication that is effective. They want a swift, peaceful death,” he said.

Using the initial drug regimen in place when the law was passed, 34% of all patients took longer than two hours to die; one man died after 11 hours. A second regimen reduced that to 20%. With the current protocol, fewer than 10% of patients take longer than two hours to die, and most patients die in 1.1 hours, on average.

The protracted deaths didn’t create suffering for patients; they are in a deep coma. But the lengthy vigils can be agonizing for loved ones.

“After two hours, people were starting to get concerned, and restless,” Shavelson said. They wonder what’s happening. People start walking around the room, going into the kitchen. It disrupts the meditative mood. Between two and four hours – that’s not ideal. Anything over four hours we consider to be problematic.”

“I was looking at what was happening and thinking: ‘This isn’t as good as it’s been hyped up to be,’ ” he said.

There’s no repository of information to help doctors in states that have passed aid-in-dying laws, representing 22% of the U.S. population. The U.S. National Institutes of Health won’t fund the research. Medical schools don’t teach it. Hospitals don’t oversee it. Without that official support, medical journals won’t publish any findings.

Traditional medical research is conducted at universities and medical schools, “and they won’t touch the topic,” said Shavelson. “They’ve completely abrogated their responsibility to patients who are dying … bowing out of their traditional role of teaching, research and providing quality care. It’s taboo. There’s still a stigma.”

When aid-in-dying was first passed in Oregon in 1997, patients were given secobarbital, sold under the brand name Seconal. It induces deep sleep, then a coma that is so deep that the brain no longer drives respiration.

But that drug wasn’t consistently quick. Then it became prohibitively expensive, finally unavailable.

To replace Seconal, the doctors invented a three-drug cocktail — a painkiller, sedative and a heart-slowing agent — based on their experiences with overdose deaths. They later added another cardiac drug. But problems remained.

While sitting at the bedsides of several six-hour deaths, Shavelson pondered what was going wrong. He speculated that one cardiac drug was rendered ineffective by the large quantities of the other drugs. So he separated that out and gave it earlier, so it had time to act.

When some delays persisted, he replaced one of the heart-slowing drugs for a heart-damaging drug.

Based on newly compiled data from Academy clinicians, the formula is about to be improved again, pending confirmation of results.

Shavelson and Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.

“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.

“We haven’t made it less sad. It’s still death. There’s tears and crying,” he said. “But it’s a better ending.”

Complete Article HERE!

At 31, I have just weeks to live. Here’s what I want to pass on

Now that there’s no longer any way to treat my cancer, I’ve been reflecting on what I want others to know about life and death

‘I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Be pleased that you’ve made it.’

By

At the beginning of April I wrote a piece for the Guardian. If you haven’t read it, the headline pretty much sums it up: “Terminal cancer means I won’t see the other side of lockdown”. Given the pandemic and the announcement of shielding for vulnerable people, I thought I wouldn’t be able to live out my last few months in the way I’d imagined. It seemed like I would be stuck alone, with no light at the end of the tunnel, and without the comfort of friends or family.

Five months on, I’m still here, but much has changed. Thankfully, the experience wasn’t as bleak as you might think. During the first few weeks of lockdown I found I was floating nicely through the time by staying occupied and upbeat. In many ways, you can’t beat the liberation of being able to wake up when you feel like it, having few plans set in stone and being able to do whatever you want with the time you have.

Over the past couple of months, though, my energy levels have dropped, and I have started doing less. I look drastically different. I have lost a lot of weight. A 20-minute coughing fit is now part of my morning routine while my chest tries to settle itself. It’s nothing that some steroids, morphine, an iced drink to settle my throat and time spent dry-heaving in front of a bucket won’t eventually sort out, but it can get really distressing – like an intrinsic panic response.

At points I was really struggling. The loneliness of Covid was making me miserable, and I needed company. But my sister came to the rescue at just the right moment. She moved back into our shared flat at the end of June. It made a huge difference, and I don’t know where I would be without her. After months of isolation, having a family member close by changed everything.

At the same time, out of the blue, I was told I was finally suitable for a drug trial that had been dangled in front of me for more than a year. The oncologists made it very clear that this would not be a “magic bullet”, and the goal would be to extend life by a few months. The aim of the treatment would be to stop the cancer stealing all the nutrients and energy my body needs.

But I was not in the same good shape I had been in at the beginning of other treatments; I was extremely short of breath, unable to exercise and felt lethargic. And after pinning my hopes on the idea of a drug trial for so long, it took just over a week for it to batter me. My days involved moving from my room to the sofa, feeling like I had flu and struggling with mental fog. Almost immediately I realised I just couldn’t do it. Life for me is about living, not just clocking up the years. And this drug made living almost impossible.

I realised I had to finally accept the inevitable: that there was no treatment. I thought this mindset would leave me feeling completely liberated. I was wrong. With nothing left to fight, it really was just a question of waiting. The battle became emotional and mental. It has forced me to reflect.

The first three decades of my life were pretty standard. Well, actually they were awesome, and everything was going pretty perfectly with regards to work, health, relationships and friends. I had plans for the future, too: learn some Spanish, see more of central America, and get a bit more out of it with some volunteering too.

Elliot with his sister at Lulworth Cove, Dorset.

I imagined settling down in my 30s or 40s with kids, a mortgage and so on. Or maybe I wouldn’t. Maybe my friends’ children would call me Uncle Elliot as their parents gathered in the kitchen looking slightly concerned about their single 45-year-old friend about to set off travelling around Mongolia. Either way, growing older with my mates and living my life to the full was always my ambition.

Of course, the second part of this storyline won’t be written now. It’s a shame I don’t get to see what happens. But everybody dies, and there will always be places and experiences missing from anyone’s life – the world has too much beauty and adventure for one person to see. I will miss marriage or children, blossoming careers and lives moving on. But I’m not alone in my life being cut short, and I think my time has been pretty good.

At this point I should say a word to my friends. Being this ill complicates all relationships. The rut I found myself in a few weeks back hasn’t lifted. I’ve definitely been “feeling the victim” a lot more than usual. My acceptance that my time and energy is now limited comes with the knowledge that I won’t be able to catch you all properly to give our relationships the time and appreciation they deserve. I get so many messages from you all, which often exceed the energy I have to reply. Where I am able to see people, I’d just say keeping me company and being positive is helpful. I want fun, laughter, happiness, joy. I think it’s very possible to have this kind of death – there is likely to be a shadow of sadness hanging over proceedings, but for the most part I want everyone relaxed and to be able to feel the love.

Because I know that that moment isn’t too far away. I haven’t asked for a specific prognosis, as I don’t believe there’s much to gain from doing so, but I think it’s a matter of weeks. Medicine has luckily turned this into quite a gentle process. That really does take a lot of the fear away. And I’m hoping impending death now grants me the licence to sound prematurely wise and overly grandiose. Because I’ve had time to think about the things that are really important to me, and I want to share what I’ve discovered.

First, the importance of gratitude. During my worst moments – the shock of cancer diagnosis, the mental lows and debilitating symptoms of chemotherapy – it was difficult to picture any future moments of joy, closeness or love. Even so, at those times I found comfort in remembering what I have: an amazing family, the friends I’ve made and times I’ve shared with them, the privilege of the life I’ve had.

Second, a life, if lived well, is long enough. This can mean different things to different people. It might mean travel. I’ve had the good fortune to be able do this, and can confirm that the world is a wonderful place full of moments of awe and amazement – soak up as much as you can. It may mean staying active, as much as possible – the human body is a wonderful thing. You only appreciate this when it starts to fail you. So when you find yourself slipping into autopilot, catch yourself, and take simple pleasure in movement, if you can. Look after your body because it’s the only one you have, and it’s bloody brilliant. Knowing that my life was going to be cut short has also changed my perspective on ageing. Most people assume they will live into old age. I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Instead, be pleased that you’ve made it. If you feel like you haven’t made the most of your last year, try to use your next one better.

Third, it’s important to let yourself be vulnerable and connect to others. We live in a society that prizes capability and independence, two things that cancer often slowly strips away from you. This was naturally a very difficult pill to swallow for a healthy, able late-twentysomething male, but having to allow myself to be vulnerable and accept help has given me the best two years of my life, which was pretty inconceivable at the time of diagnosis. Vulnerability has shown me what phenomenal people my sister and parents are – words can’t do justice to how much they have done for me. The same applies to my friends – what better way is there to spend two years than being surrounded regularly and closely by these people?

Fourth, do something for others. Against the backdrop of Covid-19, Black Lives Matter and the desperate attempts of migrants to cross the Channel, my thoughts really turned to those who have not had my privilege – whether that’s by virtue of socioeconomics, ethnicity or the country I was born in. I always try to remind myself of this.
Fifth, protect the planet – I can’t leave this off because it’s so important. I’ll be gone soon, but humanity will still be faced with the huge challenge of reducing carbon emissions and saving habitats from destruction. In my time here, I’ve been lucky enough to see some natural wonders and understand how precious they are. Hopefully future generations will be able to say the same. But it will take a massive collective effort.

If you asked me what I’d want to leave behind, it would be a new awareness of these things among my friends – and anyone who’ll listen, really. I was astonished by the number of people that responded to my article in April. I now find myself in a position where people are asking me how they can help or what they can do that would make me happy. Apart from the obvious – looking after each other once I’ve gone – I’m going to push for people to give, be that money or time. I’ve already had so many people ask which causes I recommend, and there are loads, but I’d say any that align with the values I’ve sketched out above would have my blessing. Among friends and family there is talk of setting up a small charity in my memory.

Despite some very low times, it’s worth repeating that the period since being diagnosed has been made not just bearable but actually fantastic. I’ve had new experiences that haven’t seemed tainted by cancer – and those experiences were, as always, much better shared. In a situation that is pretty new for most of my loved ones and friends (I am yet to meet anyone I grew up with who has had to deal with cancer or a similar chronic illness at my age), it has been amazing watching them all rise to the challenge. I’m not sure if it’s just that I know a high proportion of amazing people (possible) or if most human beings have this capacity for connecting and recognising what’s truly important (very likely).

After the gut-punch of cancer diagnosis, I’ve really struggled to define a purpose for my own life. I found in time this came naturally. Life is for enjoyment. Make of it what you can.

Complete Article HERE!

Patients with COVID-19 shouldn’t have to die alone.

Here’s how a loved one could be there at the end

By &

While the number of new COVID-19 cases in Victoria continues to trend downwards, we’re still seeing a significant number of deaths from the disease.

The ongoing outbreaks in aged care, and the fact community transmission is continuing to occur, mean it’s likely there will be many more deaths to come.

As a result of strict infection control measures restricting hospital visitors, tragically, many people who have died from COVID-19 have died alone. Family members have missed out on the opportunity to provide comfort to the dying person, to sit with them at their bedside, and to say goodbye.

But it doesn’t have to be this way. We have cause to consider whether perhaps we could do more to preserve the patient-family connection at the end of life.

Who can visit?

There’s some variation between Victorian health-care facilities in how visitor restrictions are applied. Some allow visitors to enter hospitals for compassionate reasons, such as when a person is dying. But visitors are not permitted for patients with suspected or confirmed COVID-19.

The latest figures show 20 Victorians are in an intensive care unit (ICU) with 13 on a ventilator. This indicates their situation is critical.

Despite hospitals, and particularly ICUs, being adequately prepared and resourced to provide high-level care for people diagnosed with COVID-19, patients will still die.

Family-centred care at the end of life in intensive care is a core feature of nursing care. So in the face of this unprecedented global pandemic, we realised we needed to navigate the rules and restrictions associated with infection prevention and control and find a way to allow families to say goodbye.

Our recommendations

We’ve published a set of practice recommendations to guide critical care nurses in facilitating next-of-kin visits to patients dying from COVID-19 in ICUs. The Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control have jointly endorsed this position statement.

The recommendations are evidence-based, reflecting current infection prevention and control directives, and provide step-by-step instructions for facilitating a family visit.

Some of the key recommendations include:

  • family visits should be limited to one person — the next-of-kin — and that person should be well
  • the visitor must be able to drive directly to and from the hospital to limit exposure to others
  • they should dress in single-layer clothing suitable for hot machine wash after the visit, remove jewellery, and carry as few valuables as possible
  • on arrival, staff should prepare the visitor for what they will see when they enter, what they may do, and what they may not do (for example, it would be OK to touch your loved one with a gloved hand)
  • a staff member trained in the use of personal protective equipment (PPE) should assist the visitor to put on PPE (a gown, surgical mask, goggles and gloves) and after the visit, to take it off, dispose of it safely and wash their hands
  • where possible, the visitor should be given time alone with their loved one, with instructions on how to seek staff assistance if necessary.

We also highlight the importance of intensive care staff ensuring emotional support is provided to the family member during and immediately after the visit.

Tailoring the guidance

It’s too early to know the full impact a loved one’s isolated death during COVID-19 may have on next-of-kin and extended family. But the effect is likely to be profound, extending beyond the immediate grief and complicating the bereavement process.

These recommendations are not meant to be prescriptive, nor can they be applied in every circumstance or intensive care setting.

We encourage intensive care teams to consider what will work for their unit and team. This may include considerations such as:

  • whether there are adequate facilities in which the visitor can be briefed and don PPE
  • whether social distancing is possible with current unit occupancy and staffing
  • whether an appropriately skilled clinician is available to coordinate and manage the family visit
  • each patient’s unique clinical and social situation.

Rather than just using a risk-minimisation approach to managing COVID-19, there’s scope for some flexibility and creativity in addressing family needs at the end of life.

Complete Article HERE!

5 Ways To Make Your Dog’s Last Days Their Best Days – DogTime

By Maggie Clancy

Grieving over the loss of a pet is traumatic. But sometimes, it can be even harder when we know that our dogs don’t have much time left. Anticipatory grief is real, and it’s a completely normal emotion to feel.

Dogs are very intuitive, and your grief may be contagious to your ailing pet. Perhaps instead of spending your remaining time with your canine companion in a state of grieving and sadness, you can make the rest of your dog’s life as comfortable and wonderful as possible.

Here are some tips on how to make your dog’s last days the best that they possibly can be.

Create A Bucket List

Dog parent Riina Cooke made the decision to make a bucket list for her terminally ill Boxer, and it helped her with the grieving process tremendously. From a cheeseburger to a pedicure, she filled her dog’s remaining time with fun and happiness.

What makes your dog ecstatic? Is it taking luxurious car rides? Hanging out with some of their favorite friends?

Create a list of what your dog loves to do best, and cross off as many as you can as long as your dog’s health and safety permits.

There’s nothing better than seeing your pup at their happiest, and there’s no better way to remember them than in that state, as well.

Go All Out With The Food

If your dog’s vet agrees that certain people foods are okay for your dog to ingest, give your pup the tastiest, most decadent food possible.

When my childhood dog, a nine-year-old Cocker Spaniel, was suffering from a myriad of ailments, we gave her steamed rice and steak every night for dinner. Some nights, her dinner was fancier than what the humans of the household were eating.

Ask your vet which foods are appropriate, and start making Fido gourmet meals.

Indulge In All Forms Of Pampering

Go buck wild with any and all forms of pampering, especially anything that will relax and soothe your dog.

Have a dog masseuse come to your house. Go to a dog bakery and get them the most outrageous dog cake you can find.

You can even go a little less traditional route and do things like take your dog to a pet communicator or psychic to hear what they’re really feeling. You may not be a believer, but it will probably be a fun experience and a fond memory.

Get Educated On Pain Management

This may not be the most fun part of the list, but it’s crucial. If your dog is suffering, it may not always be apparent that he or she is in pain. Educate yourself on the signs of pain in dogs.

If your dog hits a point of extreme pain or a point where you cannot take care of your pup yourself, it may be time to consider dog hospice care. Much like human hospice care, dog hospice care is from the comfort of your own home.

You can work with your vet on things like administering medications and deciding if and when it’s the right time for euthanasia.

Allow Your Friends And Family To Help You

In order for you to be in the right state of mind for when your dog is nearing the end of their life, you should have a solid support group. Talk to friends who know your dog well, family, and a veterinarian you can trust.

Many animal hospitals also offer support groups. By having this ring of support for yourself, you will be able to effectively and lovingly support your pooch through this painful time.

Letting go of a dog is never easy, but you can make it as positive of an experience as possible for both you and your dog.

If you’ve gone through the grieving process of a dog passing away, what did you do to make your dog’s last days their best? Do any fond memories bring you comfort? Let us know in the comments below!

Complete Article HERE!

Pa’s Smile

Jaimal Yogis’s dad explained his final wishes: “I’ve gotten so much from Buddhism for good living, I’m not going to pass up their tips for good dying.”

by

The first and only time I bought dry ice, the grocery store clerk asked if I was going camping. “No,” I muttered, then managed to stop myself from saying it was for a body. The ice really was to lay my father’s corpse on.

An air force colonel who was skeptical of organized religion, my father, who we call Pa, wasn’t sure the Tibetan Buddhist tradition of leaving the dead undisturbed for three days was necessary. But, as he said after being diagnosed with late stage lung cancer, “I’ve gotten so much from Buddhism for good living, I’m not going to pass up their tips for good dying.”

As if summarizing Socrates in his famous pre-execution speech, Pa often said he had no idea where he was going. ‘If the lights go out, it’ll be a good rest,’ he’d say. ‘And if there’s more, it’ll be a great adventure.’

These three days are not unique to Tibetan, or more accurately, Vajrayana Buddhism. Irish wakes often last two or three days while a soul departs, and Jewish Midrashic texts say a soul hovers over the body for three days (or seven) until the body is buried. The idea behind the three days in Vajrayana Buddhism is that as the breath and heart stop, our gross level of consciousness dissolves but more subtle levels of consciousness remain in the body for up to about seventy-two hours. During that time the subtlest stream of consciousness is said to leave, a transition known to go more smoothly if the body can chill—in Pa’s case literally since under California law dead bodies have to be kept on ice.

“Otherwise they tend to smell like dead bodies,” our hospice nurse informed us.

“Right,” I nodded. “And where do we get the ice?”

“Grocery store.”

“Of course.”

As if summarizing Socrates in his famous pre-execution speech, Pa often said he had no idea where he was going. “If the lights go out, it’ll be a good rest,” he’d say. “And if there’s more, it’ll be a great adventure.” Still, he’d reasoned his way toward the three-day death plan. In addition to reading up on how Vajrayana Buddhists use strict tests to prove they’ve found reincarnations of former teachers, he’d read the work of doctors like Sam Parnia of NYU Langone Health. Dr. Parnia has meticulously catalogued data on people who’ve died clinically, sometimes for hours, before being resuscitated. These briefly dead folks often report vivid dreams after waking, sometimes ones in which they correctly recount what doctors had been saying—“Going to the game later?”—when the patients had no heartbeat. “That’s enough evidence for me,” Pa said. “Don’t poke or prod me for a few days.”

As the actual death part of the three-day death plan approached, we—his family—wondered if having Pa’s cold body steaming on carbon dioxide in the bedroom might intensify our grief. And might it be a little creepy? It turned out to be just the opposite.

Death leaves you in a dreamy shock. You don’t know if you should wail or drive all night to Mexico or finally get to writing your own will. When Pa stopped breathing on a warm summer evening, dressing him in his aloha shirt and favorite Christmas socks, then adorning his room with flowers, was just the beautiful busy work our reeling minds needed. Reading Jane Hirshfield’s “It Was Like This: You Were Happy,” a special request from Pa, while he was actually there in the room felt more heart opening than reading it again while scattering his ashes. And as we sat with Pa each of the three mornings while reading him The Tibetan Book of The Dead—a text meant to help us navigate the space between lives—it felt as if we were on a kind of spiritual tour bus with him, visiting the realms where awakened beings are born from lotuses and truths are whispered on the breeze.

Perhaps most surprising was how much the three-day death plan helped before death. As Pa was starting to show signs of getting close to the end, my sister Ciel and I asked if he would like to hear a Medicine Buddha ceremony that is often done for the sick and dying. “You don’t have to bother with that,” Pa said, continuing his usual stubborn quest to keep us from doting. But we argued that the ceremony would be a good warm-up for when he was down for the count and we were reading The Tibetan Book of the Dead, which Tibetans actually call The Great Liberation for Hearing in the Bardo. Since this made it sound like the reading was for us, Pa agreed.

We sat around his bed, switching back and forth between botching the Tibetan chanting and reading the English translation. The ceremony took about an hour, and we thought ­­Pa had slept through it. But at the end, he sat up with tears in his eyes. “I am so honored you did that for me,” he said. “And now I’m going to get up and see the sky one more time.”

“We’ll get the wheelchair,” Pa’s wife, Margaret, said reasonably.

“No,” he said, “I’m going to walk.”

Pa had already fallen behind the toilet in such a precarious position we’d needed the fire department to come dislodge him, and he’d been bedridden for days now. But charged up by the chanting, Pa managed to lumber slowly to the back porch, rasping with every breath.

We opened the door. Pa turned his face up bracingly to the blue. He looked so pale, I half expected him to croak right there. Instead, he then looked down at a few small stairs he would have to navigate in order to be fully outside. “Take me back,” he whispered. “I want an easy death. Not to fall off the damn steps.”

We laughed. Finding humor in the face of hardship was one of Pa’s great gifts. But we hadn’t heard zingers with gusto like this for a few weeks. And I think, in addition to the power of the ceremony itself, knowing that his family would be there for three full days—botching more Tibetan chants around him—was a great comfort, a lightening.

Philosophical aspects of the plan were helpful too. In hospice Pa occasionally felt unsure of where—even who—he was. One day he called himself King Henry and my aunt the queen. “You wouldn’t believe what’s happening,” he told me. “It’s like I’m disappearing.” This was scary, but Buddhist wisdom for conscious dying gave Pa a place to put his fears.

According to Vajrayana Buddhists, our gross consciousness is where we construct our version of reality through our senses. This construction is like a video game in our heads in which we are the most important character, the one whose suffering matters most, the one who should win all the gold coins because, as our senses (falsely) tell us, we exist separately from the rest of reality. The more we let go of this illusory separation from others, the more room there is to experience our true blissful and compassionate nature. Vajrayana Buddhist teachers say this true nature is most easily accessible at death because, as opposed to meditative glimpses beyond the veil, in death the gross levels of consciousness drop away automatically. So, when Pa was scared or disoriented, we could remind him that losing a mere idea of himself was not just natural, it was part of spiritual awakening.

In his last hours, Pa’s brow was furrowed and his body appeared tense. He looked like he was trying desperately to remember something. Ciel, Margaret, and I were taking turns sitting with him, and fittingly it was just when Margaret was singing him Nat King Cole’s, “When I Fall in Love,” a song they’d danced to on West Cliff Drive above the sea, that Pa finally let go. As he did, his brow smoothed completely, making him look instantly younger. A distinct half-smile appeared on his lips. A Buddha smile. And whether it was Pa’s newfound bliss, rigor mortis, or some combination of both, that smile remained perfectly serene for all three days.

Complete Article HERE!