Hospices Seek to Balance Technology with the Human Touch

Hospices nationwide have leveraged technological advances to improve workflows, referral communications and enhance patient care. While telehealth in particular has been vital for hospices to continue reaching vulnerable high-risk patient populations during the COVID-19 pandemic, providers must proceed with caution when it comes to technology and patient care. 

Prior to the pandemic, technology in the hospice industry was evolving, with systems such as predictive analytics, telemedicine, artificial intelligence and virtual reality gradually changing the end-of-life care landscape.

“We have obviously seen an increase in the use of telehealth, and the word of caution there is we want to make sure we learn from this pandemic and accelerate some of that move,” said Edo Banach, president and CEO of National Hospice and Palliative Care Organization (NHPCO) in a recent Netsmart webinar. “We have to make sure that we use technology appropriately, but not to replace the human touch that is the sweet spot of hospice and palliative care organizations.”

NHPCO has been among the advocates in the hospice and palliative spaces calling for regulatory reform as telehealth pushes forward during the coronavirus pandemic. In August the U.S. Centers for Medicare & Medicaid Services (CMS) announced that it would make permanent a number of the temporary flexibilities to expand telehealth that the agency implemented in response to the pandemic, though of rules extended that will affect hospices remains uncertain. Concerns have flooded both the hospice and palliative care fields as providers strain to navigate uncertain technological reimbursement opportunities ahead.

“Importantly, we have to make sure that hospices and palliative care programs are compensated for the technology,” Banach said. “They are nowhere near as compensated as hospitals and other institutions when it comes to technology. That’s something that needs to improve. It’s really going to be important for individuals to have access to the technology that they need to get care in the home and for the clinicians to similarly have that same access and support. This is going to include technology for the delivery of meals and for the delivery of pharmaceuticals, technology that enables vital signs to be taken, technology that allows individuals to stay connected. The investment there is really massive. Billions of dollars of investment have gone into interoperability and state changes.”

Investing deeper in technology comes with considerations of data analysis and relationship-building capabilities as hospices look ahead to a value-based payment environment. Enhancing data analysis will be key for hospices looking to demonstrate their value proposition to Medicare Advantage plans in anticipation of the hospice carve-in coming in 2021. Designed to improve continuity of care and increase coordination among providers, the ability to reach patients sooner through interdisciplinary partnerships is another potential benefit from expanded technology use.

“The most important thing is diversification. If there is an opportunity to provide person-centered interdisciplinary care under contract with different kinds of entities, that’s going to be really important for hospices to establish those relationships to acquire the technology that’s necessary to take risk and really to begin, or to continue to live, in this sort of new value-based world because at some point, it’s going to be all that’s left — for better or worse. It’s really important that if you’re not in that space, to get in that space and to diversify as much as possible. Those who do that will be quite successful,” Banach said.

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!

The big difference between palliative care and hospice care

By Gareth Mahon

The difference between palliative care and hospice care

Hospice care, on the other hand, is more specific; it is a synonym for end-of-life care. In order to receive hospice care, you’ll have to stop curative treatments.

Unlike palliative care, hospice care is short term; it begins only after a medical assessment indicates you have six months or fewer left to live. Palliative care, however, can and should begin at any stage of a life-limiting illness.

How to create an end of life care plan

If you are receiving palliative care for a terminal illness, then it’s important to create an end of life care plan that describes the kind of care you want. To create your plan, consider these questions:

  • Where do you want to be for this stage of life? You can receive palliative care at home, in hospital, in a hospice, or in an aged care facility. The best location for you will depend on your needs, what type of care you want, what equipment and support is needed, and your goals.
  • Who do you want to provide care? Do you want your GP to provide most of your care? Do you have specialist health professionals such as an oncologist or physiotherapist? Do you want to receive care from a palliative care team that includes a social worker, a psychologist, or other specialists?
  • Who do you want to make decisions if you’re not able to? You can designate a loved one to make decisions about your care on your behalf if that becomes necessary.

Benefits of palliative care

Palliative care can significantly improve your quality of life. Even if you’re receiving it as part of end-of-life care, palliative care helps you focus on the life you’re experiencing now. The goal of palliative care is to make your life now as full and comfortable as possible.

One of the key goals of palliative care is to reduce the physical symptoms of your disease. This treatment focuses on alleviating symptoms such as pain, nausea and fatigue. Reducing your symptoms can reduce the suffering caused by disease, making you more comfortable and enabling you to enjoy activities and time with your loved ones.

Palliative care also provides spiritual and social support. This could mean providing you with counseling and care from a clergy member of your religion. It could also mean grief counseling and therapy for your and your loved ones, or care from a social worker who provides you with resources and counseling. In addition to religious support, you can receive care such as narrative therapy, counseling and education.

Finally, palliative care offers holistic support for your family and loved ones. It includes both physical and psychological support. Care for your family could include grief counseling and connection with community resources.

How do I get palliative care?

You qualify for palliative care if you have a serious, incurable illness. It does not have to be a life-threatening illness, but it does have to be an illness that significantly limits your quality of life for you to be eligible for palliative care.

To receive care, you simply need a referral from a healthcare provider. Usually this is your GP, but it can be a specialist for your illness or any healthcare professional who knows about your condition and can recommend care. If you think you may be eligible, you can ask your doctor to refer you.

Most palliative care is covered by Medicare at no cost to you. However, you might have to pay fees for some services. If you choose to receive care at home, then you might need to pay for specialized equipment or nursing staff. Some complementary palliative treatments or therapies may only be available by paying for them privately. If you choose to go to a private hospital or to use a respite service, these may also come with associated fees.

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!

This is what a good death could be

By Larry Beresford

Recently, a neighbor and friend of mine died. After her cancer was diagnosed as incurable, she was referred to hospice care, and family members traveled long distances to spend quality time with her during her last month of life.

Her neighbors in our condo building clamored for slots in her packed social calendar. Two days before her death, she held a socially distanced open house for people lined up six feet apart outside her door to come in for a few minutes, one and two at a time, to say their goodbyes. Then we received an email telling us she had gone, quietly, at home, in the presence of family. All in all, the kind of good death promised by hospice care at its best. And yet there’s something about how it unfolded that I’m having trouble wrapping my head around.

I had spoken with my friend a couple of weeks earlier, and she told me that she was going through the steps to obtain medical aid in dying – which became legal in California through the 2015 End-of-Life Option Act. It requires two oral and one written request to a physician for a lethal dose of medication, with a 15-day waiting period and confirmation of eligibility by a second physician. My neighbor complained to me about the bureaucratic hoops, knowing that I am a medical journalist who has written extensively about hospice and end-of-life care and trusting that I could listen non-judgmentally.

I told her that the regulatory hurdles, rightly or wrongly, were crafted to prevent the appearance of abuse for a procedure that continues to generate controversy in medical ethics. Advocates say terminally ill patients should have the right to choose the time of their deaths and to opt-out of the pain and suffering of living with an advanced illness. Opponents argue that good hospice and palliative care can obviate that pain and suffering and thus the need for patients to request a medical escape from this precious life. There is little room for compromise between those two views, but the option is now legal in California and eight other states.

Some hospices and hospitals will not participate in the end-of-life option, and it can be hard to find a doctor willing to sign the necessary forms. Very few terminally ill patients actually go through with obtaining and consuming the lethal medication. Only 551 Californians started the process in 2018, and 337 took the medication to hasten their deaths, according to state records. There are also questions about the choice of medication, which may include a combination of morphine, diazepam, and propranolol, a beta-blocker that slows the heart.

My parents died of cancer or cancer-related complications. I was present in my mother’s hospital room when death came to claim her. I was a hospice volunteer for more than 20 years and sat with a number of cancer patients in their final days. In other words, I feel familiar with the process by which cancer, which kills more than 600,000 Americans every year, makes its terminal advance.

Some patients may pursue oncologic treatments until the end, trying to stave off that advance. For others, hospice provides an option to step off the medical treadmill and receive care at home with the support of an interdisciplinary team of end-of-life experts who focus on comfort, symptom management, and maximizing opportunities for dignity and peace. Either way, terminal cancer is relentless.

With good palliative medical management, many – but not all – of the worst side effects and symptoms of terminal cancer can be managed. It can also be very messy, with incontinence, other bodily fluids, and unpleasant odors. All bodily functions will fail by the end. Most of the time, it unfolds on the disease’s timeline, as it has throughout human existence.

When someone dies of cancer, there is a retrospective sense of its inevitability, that this is what had to be. Those who witnessed its relentless advance can find comfort in that inevitability. It wasn’t a cosmic mistake that cancer has taken their loved one; it was part of the natural order of things. The loss and grief for those left behind are real, but the memories, hopefully, can be free of recriminations.

The end of life can also be a time to focus on expressing what Dr. Ira Byock calls “the four things that matter most” as one faces life’s end: please forgive me, I forgive you, I love you, thank you – plus a fifth, saying goodbye. Some have found that life becomes singularly precious when its ending looms, with opportunities for the most poignant kinds of resolutions.

To me, this is what a good death could be, one grounded in the reality that the cancer could not be denied but with doors opened for meaningful interactions along with the mess and pain. And there’s the ineffable profundity of a loved one’s final moment of transition from this world, such a huge, terrible mystery, yet guaranteed to everyone who lives. That should command our respect.

What happened to my friend? A peaceful, natural passing from the cancer? Or did she avail herself of the end-of-life option to make it happen a little sooner? If the latter, was it pain, or loss of control over the messy details, or an unwillingness to continue living with the existential awareness that death was lurking around the corner? Was she tired of living, that tiredness magnified by the cancer, or tired of talking about it? I’ll never know what she chose. It’s really none of my business. My admiration for her is unaffected, undiminished.

But I find to my surprise, thinking it might have been the case, that something feels missing. It doesn’t seem final, or quite so real. With COVID, her memorial gathering was transferred to Zoom. To me, it just doesn’t feel like the same thing, death’s natural advance versus a medical intervention to check out early, even if the outcome is more or less the same.

What were the unmanaged issues to make ending it sooner seem the right answer? Could something have been done to make her more comfortable, more willing to stay for a natural end? Could there have been more poignant farewells, more reflections, more stories? Could I have had one more chance to talk with her about what she was seeing from her vantage on the rim of eternity? Could I have heard her laugh one more time? And am I selfish to want that? That’s what I can’t get my head around.

Complete Article HERE!

In pandemic era, the term palliative care is even more scary for some.

So specialists want to rename it.

By Haider J. Warraich

Palliative care has an image problem.

It’s a medical specialty that focuses on providing relief from the symptoms and stress of a serious illness to improve the quality of life for both patient and caregivers. But while the specialty’s goal is to help all patients with a serious, potentially life-threatening illness, palliative care specialists are almost always involved with patients approaching the end of life.

The result is that the very phrase “palliative care” has become frightening to many people with critical illnesses and their families, wrongly raising the idea that they are being sent to specialists who will help them die. Now a growing movement is advocating to rename palliative care so that patients — and doctors — won’t fear using it.

A recently published research study analyzing the general public’s perception of palliative care among more than 5,000 older Americans revealed that over 70 percent of participants did not even know what palliative care was.

Katy Butler, a health-care journalist who has written about her own experiences as a caregiver for her parents, wrote in an email: “Although I had a general sense of the meaning of palliative — to soften, to soothe — I didn’t understand anything about what it meant in medicine. People in crisis do not have the headspace to learn new vocabulary. It’s one of medicine’s major failings that it expects them to.”

Of those who are aware of palliative care, the same study shows almost two-thirds think it is the same as hospice, which is a service delivered at home or in a facility for someone with an expected survival of no more than six months.

Most physicians are likely to call palliative care specialists primarily when death is imminent — many worry that calling in a palliative-care consultation will increase anxiety and fear among patients. Diane Meier, a palliative care specialist who directs the Center to Advance Palliative Care, said “doctors are the group most fearful of death. We are people who like to achieve control over the uncontrollable. For our profession in particular, it is existentially threatening. Any acknowledgment that life is finite, that we don’t live forever, is like saying there is no God.”

Yet palliative care not only has been shown to repeatedly improve quality of life in patients with conditions such as cancer and heart failure, but also has been shown in some studies to help people live longer, perhaps through avoidance of potentially ineffective treatments, procedures and hospitalizations.

To increase the acceptability of palliative care for both patients and clinicians, as well as to delink it from death, palliative care practices around the country are substituting the name “palliative care” with “supportive care.”

There is evidence to suggest that this name change might reduce reluctance to engage palliative care specialists in the care of patients with advanced illness.

A study from MD Anderson Cancer Center in Houston showed that changing the name of the palliative care service to supportive care led to not only an increase in referrals by 41 percent but also earlier referrals: Patients seen by “supportive care” lived on average for 6.2 months, compared with 4.7 months among patients seen by “palliative care.” In a randomized trial, patients with advanced cancer viewed the term supportive care more favorably and were more likely to anticipate using supportive care rather than palliative care.

Words clearly matter and perhaps never more so than when life hangs in the balance. Yet even as evidence mounts, one study found that many palliative care specialists oppose a change of the specialty’s name. There are countless medical journals and organizations that have palliative care in their name.

“How do you identify as a tribe, as a field, as a subspecialty if you don’t know what your name is,” said Meier, a professor at the Icahn School of Medicine at Mount Sinai. Yet Meier also believes “we should call it whatever it takes to get it to the patients.”

The resistance to palliative care is ultimately rooted in our collective denial of our mortality. “Changing the name doesn’t change the underlying dynamic,” said Anthony Back, a palliative care physician and professor at the University of Washington in Seattle who was a co-author of the recent study on public perceptions. “Palliative care specialists are often used [late in the process] as the ‘brink of death consult.’ And if we don’t change ourselves, changing the name isn’t going to be enough.”

Even as the debate goes on, the use of “supportive care” is growing among those who treat patients, and instead of educating the public about what palliative care means, they want to focus on what palliative care does — what the benefits are not just to those at the very end of life.

Yes, palliative care specialists will be asked to see patients where other doctors find them of most value — when death is imminent — but the concept that really needs rebranding is death itself. As long as patients and doctors react to that fear by recoiling at its every mention, any new name reminding them of their mortality will quickly become tainted.

This seems important at this particular moment: the covid-19 pandemic has raised the specter of death for many people who hadn’t thought it would apply — yet — to them. People not only face a higher risk of premature death from the disease, they often have to do it in the worst circumstances possible — with a breathing tube down their throats and all by themselves.

Yet, because of the pandemic, palliative care doctors believe that they might have an opportunity to redefine what they do and demonstrate its value to patients in need.

“In New York, there was this urgency with which our colleagues sought our help, because they were under such extreme stress. It made me comment that covid-19 was the best marketing campaign palliative care could have asked for,” Meier said. “Our colleagues were looking to us to be the human side of medicine.”

In providing care to the sickest patients in the hospital, many of whom survived, palliative care specialists provided crucial supportive care not just to patients and their loved ones, but also the doctors struggling to take care of them.

The pandemic has given palliative care doctors more work than ever before and has added a new charge to palliative care, Anthony Back said, to fulfill our most human desire — to acknowledge the moment.

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!