Month: January 2023

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Are Wearables Helpful for Dying Patients?

— In 2009, health tech wearables hit the ground running and never looked back. Today, they’re still at the forefront of healthcare technology and expanding wildly like the old American west. Researchers and healthcare systems are excited about the promising ability of smart devices to monitor wellness and fitness, detect health problems early, and offer individualized advice like a personal coach.

by Sharleen Lucas, RN

  • Health tech wearables are devices like smartwatches, smart rings, smart clothing, smart patches, and implantables to monitor and support health and wellness.
  • Wearable health devices do offer benefits to terminally ill patients but can also present some risks.
  • Wearable devices may be more helpful for palliative care patients who still have years to live than hospice patients with less than six months.
  • Smart devices could support the health of caregivers who have little time for their own wellness.
  • Patients with a terminal illness must consider not only the benefits but also the risks before using a health wearable.

These devices are designed to support healthy living. However, how effective are they for dying patients? Can smart wearables help them, too?

What are “wearables?”

Two MIT professors created the first wearable technology in 1960. Their small computer fit into a shoe to improve their gambling outcomes at the roulette table. It took decades for technology to catch up with them.

In 2009, Fitbit hit the market as the first fitness tracking device, logging steps, distance, estimated calories burned, and sleep. Today, with 30% of Americans wearing health devices, people can buy smartwatches, smart rings, smart clothing, and even smart patches to monitor and support their health and fitness goals.

Healthcare wearable technology also includes devices implanted under the skin in various parts of the body. In the coming years, we may even wear electronic skin. Thin and stretchy like a temporary tattoo, “E-skin” is a clear, electronic adhesive placed on the skin to monitor your health.

Giving you minute-by-minute details about your wellbeing, wearable smart devices measure your health to monitor conditions and improve wellness. Some devices offer the ability to send this data to your doctor remotely.

Are wearables good for EOL patients?

End-of-life (EOL) is a term used for terminally ill patients who have six months or less to live. However, depending on where they are in their incurable health journey, patients with a terminal diagnosis can live for many years.

Palliative care is a specialty designed to care for seriously ill patients. It’s proven to help them live better and longer. Hospice is a type of palliative care for patients during their last six months.

Researchers are beginning to study smart devices for palliative care patients. Yet many palliative specialists are skeptical of using wearables for patients whose goal isn’t health progress but the quality of life in their remaining days.

In the end, as with any new technology, wearables offer both benefits and risks for EOL patients.

Benefits for hospice patients

When seriously ill patients enter their last six months of life — becoming “hospice eligible” — they no longer focus on treatment and recovery.

Most hospice workers stop checking vital signs, blood work, and other precise details of disease progression. They also remove as many medical devices as possible to “de-medicalize” the dying process. Instead of curing the disease with treatment and procedures, they help the patient live the best they can for their final months. They focus on symptom management, spiritual care, mental health counseling, end-of-life wishes, and companionship.

“Devices are a part of the medicalization of death. Unfortunately, in some cases, like advanced cancer, smart devices could cause over-treatment. When a cure is no longer possible, over-treatment increases patient suffering.”
Rebecca Gagne-Henderson, PhD, ACHPN

For smart devices to support the de-medicalization of end-of-life care, they would need to focus on the quality of life and comfort rather than improvement.

In 2021, Frontiers in Digital Health published a proof-of-concept article on a smart patch that would monitor dyspnea — shortness of breath — one of the most common symptoms of dying patients. Placed on the patient’s chest, the patch senses distressed breathing.

Though it’s a worthy concept, few healthcare teams need a monitor to assess dyspnea in an EOL patient. To a nurse or a certified nursing assistant, labored breathing is easy to identify and treat.

Veteran caregivers know there’s a risk of monitoring a device instead of the patient. While monitors are helpful and even vital in some circumstances, they can distract caregivers from carefully assessing the patient with their unique symptoms and needs.

Then again, the smart patch may support medically untrained caregivers at home by helping them identify breathing difficulties in their dying, unresponsive loved one. It’s possible a smart device could help teach them when to give comfort medications or reposition the patient.

However, monitors can also distress family members and patients with obsessive monitoring rather than peaceful, simplified care focused on the patient’s comfort.

Other useful wearables for end-of-life patients are devices that predict depression and anxiety. Mental wellness is a main concern for EOL patients. Some have difficulty expressing sadness and worries, and many healthcare workers are too busy or afraid to talk about it with their patients.

Furthermore, a smart device could help monitor a patient’s mental health symptoms — whether in a hospital or at home — and notify their loved ones or care providers.

Ideally, someone in their final months always has loved ones close by to assess their wellness. This relationship, as opposed to wearable technology, is the best treatment for the anguish of dying.

Unfortunately, however, many people still die alone — most without hospice care. Perhaps wearables could help palliative care teams remotely monitor patients dying without loved ones and trigger home visits when they need them.

Benefits for terminally ill patients

Patients can live with incurable diseases for years after their initial diagnosis. Wearables for this population are more promising than for hospice patients with less than six months to live.

Chronically ill patients dread another hospital admission. A 2019 study found that health tech wearables may improve the outpatient monitoring of cancer patients. The device could detect a decline in a patient’s condition and send the data to a doctor, catching the issue much earlier than the typical trip to the emergency department.

This early catch supports patient comfort and reduces costly readmissions for the patient and the health system. Data collection could also improve telehealth visits by recording vital signs and other assessment data before or during appointments.

Wearables may also improve care for patients with severe cardiovascular diseases and reduce their healthcare costs.

In 2021, a team of researchers assessed the relevance of medical wearables for the healthcare industry. When healthcare teams paired smart devices with relational coaching and support, 71% of patients achieved their blood pressure goal compared to only 30% who reached it without wearables and coaching.

Scientists say wearable health devices that gather cardiac data like heart rate, blood pressure, and electrical activity can help monitor the condition of severe cardiac patients. Implanted devices may eventually monitor heart failure patients, predicting negative trends and reducing hospitalizations.

Smart wearables also improve the early detection of infections like Covid-19. A study of the Oura wearable ring found that it detected a Covid-19 infection 2.75 days earlier than when most people seek testing.

Risks of wearables for EOL patients

Palliative care and hospice patients are uniquely different from healthy people and those with curable illnesses. As a result, we need more research on wearables in the end-of-life setting.

Palliative experts say constant monitoring may create problems for EOL patients, like causing false hopes, obsessions with health monitoring, or depression over lack of improvement.

Wearables could also distract from essential end-of-life goals such as enjoying time with loved ones or pursuing lifetime dreams during their final days or years.

Furthermore, smart devices are still developing. Their relevance and accuracy are improving, but many challenges still exist for using them in healthcare, like paying for the devices and integrating the data into the healthcare system.

The most concerning problem with digital health technologies, in general, may be the lack of research about security issues, data rights, and ethics of their use, as a 2021 review reported. It’s still a wild frontier tempting developers with power and dollar signs.

Nevertheless, smart wearable devices will likely become the norm in most patient situations. Studies show wearables are most effective in a close relationship with the patient’s healthcare team. This is especially true of people with terminal illnesses as they face unique symptoms and emotional suffering along their disease journey.

Caregivers can benefit from wearables

Caring for terminally ill patients is stressful, putting caregivers at risk of ignoring their own health to focus on their sick loved ones. Caring for caregivers is a major factor in patient care.

Wearables excel at health monitoring and motivational cues. Smart devices for caregivers could be the most effective use of wearables as they care for end-of-life patients.

Things to consider for EOL patients

If you or a loved one is facing a terminal illness and considering a wearable device, keep these thoughts in mind.

First, the device should help you become more in tune with your body — not less — to the point where you start to sense issues without the device.

Second, before buying a wearable health device, check with your physician about the type of monitoring most helpful in your unique situation.

Third, check your emotional response to the data, alerts, and motivational cues the device gives you. If it increases your stress levels, consider changing your use of the device or stopping altogether.

Most importantly, be sure it supports your quality-of-life goals as your disease progresses. As with all technology, it should improve your life rather than worsen it.

Most people are aware of wearable devices for monitoring health and fitness goals and workouts. However, with today’s technology, wearable medical devices can be used for patients nearing the end of life to help monitor vital signs and alert caregivers to a problem. These kinds of devices are meant to complement medical attention. They should not be a substitute for the personal, caring medical support that people with terminal illnesses need most.

Complete Article ↪HERE↩!

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Can You Imagine How a Grieving Person Feels?

— Grieving people need to tell their stories. How friends and family members can truly offer support.

by Amy Florian

An icy road. A no-fault car collision. In the blink of an eye, I became a 25-year-old widow with a 7-month-old baby boy. When John died, I was utterly devastated. And despite being surrounded by a multitude of loving, very well-intentioned people, none of them had a clue what to say or how to act around me. I felt isolated and alone.

Supporting a grieving friend. Next Avenue, what to say to someone who is grieving
Whenever you inquire about someone’s experience of grief, follow their lead in what they are willing to tell you. They will let you know pretty quickly if they don’t want to talk.

Since that time, I’ve completed advanced education and certifications in Thanatology (the study of loss, grief and transition) and I’ve worked with over 2000 grieving people. I’ve heard and seen firsthand that wrenchingly difficult losses like mine happen all the time – there is a suicide, a child dies, a home burns to the ground, or other tragedies strike. As was the case for me, when these awful events occur, the survivors often hear a chorus of would-be comforters say, “I can’t imagine how you feel!”

I’ve learned that “I can’t imagine” still leaves a lot to be desired. When tragedy strikes in the life of someone you care about, you could do so much better.

I used to join so many others in teaching people that this is a good phrase to use, because it’s not immediately hurtful like “I know how you feel.” (Never say that, by the way. Even if you’ve had a similar loss, you never know how the other person feels.) Yet by listening to so many grievers, I’ve learned that “I can’t imagine” still leaves a lot to be desired. When tragedy strikes in the life of someone you care about, you could do so much better.

The Isolation of Grief

The truth is: We have very active imaginations. We actually CAN imagine what they’re going through. We just don’t want to. We recoil at the idea of envisioning ourselves in their shoes. So we tell them, and ourselves, that we can’t imagine it, and it keeps the pain at a distance. It allows us to offer pity or even sympathy, but not empathy and companionship.

That distance is palpable to the grieving person as well. When one comforter after another keeps saying, “I can’t imagine how you feel,” they begin to feel like a lonely outcast, thinking there must not be anyone else who has ever felt like this.

And if there isn’t a single person who can imagine what this might be like, then there isn’t a single person capable of accompanying them through it. Since no one cares enough to be in the pain with them, they’d better keep it to themselves. It’s a very isolating experience.

Follow Their Lead

I offer two alternatives that are more helpful and supportive. As always, whenever you inquire about someone’s experience of grief, you follow their lead in what they are willing to tell you. They will let you know pretty quickly if they don’t want to talk, and that may be the case for a wide range of reasons.

Open the door and invite them to talk, but always allow them to shut the door and decline the invitation.

Perhaps they’ve been crying all morning and just found a moment of respite, so they don’t want to go there. Perhaps they don’t feel comfortable enough with you with talk about it yet. Perhaps they are exhausted and don’t have the energy into try verbalizing their feelings right now. So, open the door and invite them to talk, but always allow them to shut the door and decline the invitation.

In the vast majority of cases, though, their story will pour out to anyone courageous and caring enough to ask. The grieving person needs to tell their story in order to make it real, comprehend what happened to them, and begin processing the experience. It’s incredibly helpful when they find someone who is willing to listen.

You may be more comfortable with one or the other of these options. They both generate the same information, and both are totally invitational and non-intrusive.

Complete Article ↪HERE↩!

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Pressure Mounts for Hospice Reform

— As part of a growing national dialogue around hospice abuse, trade groups and government watchdog agencies are pushing regulators to make changes.

By Ava Kofman

Last week, the four largest hospice trade associations jointly sent a detailed memo of policy proposals to the Centers for Medicare and Medicaid Services, which regulates the end-of-life care benefit. Their 34 recommendations, which span eight pages, directly address the alarming business practices outlined by a recent ProPublica-New Yorker investigation.

“The New Yorker-ProPublica investigation shook the industry to its foundation,” said Dr. Diane Meier, a geriatrician at New York’s Mount Sinai hospital and a leading authority on palliative care. “You have four major industry groups coming together, as they don’t always do, on a series of significant policy and regulatory changes for hospice. This suggests — contrary to public messages about this being just a few bad actors — that it’s not just a few bad actors. There are systemic problems with the lack of oversight and the profit motive.”

Industry leaders are not the only bloc pressuring CMS for greater hospice oversight. Senators and government watchdog agencies are also pushing the agency for concrete changes. Last week, the Government Accountability Office released a report asking that hospices be required to report observations of abuse and neglect, regardless of whether the alleged perpetrator works at the hospice. MedPAC, the congressional advisory panel on Medicare spending, has again endorsed modifying the hospice payment structure to reduce part of the financial incentive for enrolling ineligible patients. And in late December, the inspector general’s office at the Department of Health and Human Services announced that curbing the abuse of hospice patients was among its top unimplemented recommendations.

Drawing on state licensing records and federal data, our story highlighted how networks of entrepreneurs are propping up an alarming number of for-profit hospices in Nevada, Texas, Arizona and California. As part of their recommendations, the trade groups flag several specific ways that CMS could use its power to curb the “inappropriate” proliferation of hospice licenses, such as increasing the number of inspections for new providers, limiting Medicare hospice certifications in high-growth areas and cutting off funding to high-risk operators. ProPublica found that some of these new hospices improbably share staff, owners and addresses. These suspicious business practices, the trade organizations note, could be treated as red flags that would trigger prepayment scrutiny or billing audits.

“Providers don’t like surveys” — inspections — “and are usually not the ones to ask for more of them,” said Dr. Joan Teno, an expert on the industry and adjunct professor at the Brown University School of Public Health. “You’ll hear various entities paying lip service to reform, but what they’re saying here is that they want to fix the problem and offering specific recommendations for how to do so. It’s unusual and impressive.”

Among its proposals, the memo discusses the need to rein in predatory marketing schemes. ProPublica’s reporting found that profit-seeking providers can take advantage of the fact that many people don’t know what hospice is to recruit new patients who are not dying. Some hospice marketers — known in the industry as “community liaisons” or “community educators” — aggressively solicit new patients with promises of free housekeeping and trips to the beach and casino. Others treat physicians to cash bounties and bottle service at Las Vegas nightclubs to gin up referrals. The groups ask that CMS update its regulations to require hospices to develop policies on “ethical marketing practices.” (Such policies, they note, must prohibit kickbacks, disclose bonuses to marketers and mandate that hospices clearly explain the benefit to patients.)

ProPublica’s investigation pointed out that practically anyone can open a hospice. I came across hospices owned by vacation-rental superhosts, a man convicted of drug distribution and a criminal-defense attorney (who once represented a hospice employee convicted of fraud and was later investigated for hospice fraud himself). The trade associations have asked CMS to prohibit individuals with convictions for certain crimes from operating hospices and to require training and background checks for hospice administrators, noting that “unqualified or risky hospice leadership” could lead to fraud or poor quality of care.

It’s hard to require that hospice owners have appropriate qualifications, however, if the identity of those owners remains unknown. As private equity firms acquire an ever-greater share of the hospice market, many families have no way of untangling who actually operates their provider. This lack of transparency, the trade groups write, “makes accountability for poor performance difficult and makes it harder for patients and families to choose quality providers.” At the moment, it’s easier to research a hotel for your honeymoon than it is to research the hospice that will care for your loved one. But it doesn’t have to be this way: CMS could make hospices disclose their owners and major investors, the groups say. It could also revamp its Care Compare website — a sort of TripAdvisor for end-of-life care consumers — to prioritize quality metrics and make its data more accessible. In response to questions from a groundswell of readers in the wake of its reporting, ProPublica published a guide to help families research their provider and spot common signs of fraud. The trade groups propose that similar information be incorporated into the official Medicare handbook for hospice consumers.

Throughout the memo, the trade groups emphasize that CMS already has the authority to implement many of their suggested reforms. The next step, they say, is making sure the agency has the funding to actually carry out its essential oversight role. “Part of our plan is to offer support in advocating for the agency to have the resources it needs, and that’s part of our goal in sharing this with Congress,” said Mollie Gurian, a vice president at LeadingAge, an association of nonprofit eldercare providers, which co-authored the memo. Gurian and her peers in the field are in the process of scheduling a meeting with CMS, which did not respond to ProPublica’s request for comment. “We didn’t all come into these discussions with the same list, but we are all committed for hospice to be the special benefit that it is and we all agree that it is under threat,” Gurian said.

Complete Article ↪HERE↩!

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Choosing to halt nourishment: an end-of-life decision

— A palliative-care specialist discusses his role with terminally ill patients who want to hasten death by not eating or drinking.

A hospice nurse provides palliative care to a man with Parkinson’s disease and cancer.

by Brian Donohue

It’s not only patient cases that inform clinicians’ expertise. Geriatrician David Gruenewald took a lesson from his mom, Mary, who at the time was a resolute, capable woman in her late 80’s. As Alzheimer’s encroached conspicuously into her life, she considered hastening her death so as not to burden her children.

“She saw this as a way of maintaining control over the end of her life,” Gruenewald recalled. “We had talked about that for decades, so it was no great surprise that she started talking about possibly ending her life.” The plan his mom considered was to stop eating and drinking.

Gruenewald, a UW Medicine specialist for older adult patients, is medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System. Keenly aware of the growing tidal wave of people age 60 and over, he recently delivered a training presentation to dozens of clinicians. Its focus: how to talk with patients who are contemplating voluntarystopping of eating and drinking, “VSED” for short.

picture of David Gruenewald with his mother, Mary
Dr. David Gruenewald with his mom, Mary Matsuda Gruenewald, in 2017. She died in 2021.

As an option for people with decision-making capacity who want to manage their death, VSED has not drawn the same public scrutiny and controversy as medical aid in dying, in which a clinician provides drugs that a patient takes — a practice that’s legal in only 11 U.S. states.

“Workers in palliative care haven’t been much aware of VSED, even though very likely it has been going on for millennia,” said Gruenewald. He added that VSED is an important option for patients expressly because it does not require a doctor’s presence or participation.

“It represents personal autonomy and choice, and healthcare organizations like the American Nurses Association are publicly declaring that VSED is an acceptable, valid approach when palliative care fails to relieve end-of-life suffering,” he said.

When a patient is nearing the end of life or has a terminal condition, and expresses an interest in hastening death, palliative-care providers work to establish that the person has full decision-making capacity that’s not clouded by conditions such as depression or advanced dementia, and has suffering that cannot be adequately relieved by other interventions.

“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED. In my mother’s case, the reasons for her suffering were key to every part of the conversation that happened after that,” Gruenewald said.

In his presentation, Gruenewald reflected on the experience of a male patient, 67, who had advanced cancer and could not tolerate more chemotherapy. The patient had been admitted to the hospital with pneumonia and voiced a wish to go home and die by self-inflicted gunshot.

“He did not see value in continuing to live and being unable to do the things that formerly gave his life meaning. In talking with him, it was very important that I understood his suffering — the physical, the emotional, interpersonal and spiritual reasons,” Gruenewald said. “And then to see if he was open to considering a less violent path, which turned out to be VSED.

picture of David Gruenewald
“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED,” said palliative care specialist Dr. David Gruenewald.

“We were able to establish trust, and then to talk through that option and create a plan with supports. It wasn’t quite what he had envisioned, but it was acceptable to him.”

Research indicates that patients who pursue VSED are typically over age 80 and significantly burdened by disease, dependent on others for care, and face a short life expectancy.

Although VSED is not very painful, Gruenewald said he would not recommend it to relieve suffering from severe physical symptoms in the final days of life. The VSED process usually lasts one to two weeks and requires resolve to carry out. Pangs of hunger and thirst typically diminish within a couple of days; dry mouth can be managed with ice chips and over-the-counter products. But the patient will grow progressively weaker, and dehydration may bring agitation and delirium. Physical and emotional support from family members and friends can help get through this phase.

“The way you die has an effect on the people that you leave behind,” Gruenewald said. “And there is evidence that, for many people, VSED can be more peaceful than dying by medical-assisted dying.”

VSED’s lack of immediacy gives the patient time to reminisce over stories and to say goodbye to friends and family. This opens the process and can make it more harmonious for all, Gruenewald said. Another advantage: It gives the patient time to reconsider.

Mary Gruenewald lived another seven years after she initially broached VSED.

“She was in assisted living by then,” her son recalled. “For most of that time, it was at least acceptable, if not high, quality of life. And she was continuing to contribute meaningfully to friends and family in a way that other people really cherished. Those would have been years of life that she would have forgone.”

Complete Article ↪HERE↩!

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Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

David and Cheryl McNally

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

Complete Article ↪HERE↩!

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Family Dynamics and Doctors’ Emotions Drive Useless End-of-Life Care

by Rutgers University

Researchers from Rutgers and other universities have developed a behavioral model that explains a long-standing healthcare mystery: Why do so many terminally ill patients undergo intense last-ditch treatments with little chance of meaningful life extension?

Surveys repeatedly indicate that nearly all people would rather die peacefully at home, yet painful, long-shot treatments remain common, and efforts to reduce usage have failed.

Previous analyses have mostly emphasized patients’ treatment preferences at the end of life. The new model, which its creators named the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE), focuses squarely on clinician psychology and family dynamics.

“Old models tended to assume that clinicians were purely rational agents, leading patients toward logical choices,” said Paul R. Duberstein, lead author of the study and chair of the Department of Health Behavior, Society and Policy at the Rutgers School of Public Health. “Once doctors have recommended a treatment or procedure, there’s enormous pressure on patients to undergo it.”

The TRIBE model combines two older theories – Socioemotional Selectivity Theory and Terror Management Theory – to explain why this happens. The model shows how emotional pressures on doctors and complex family dynamics provoke excessive efforts to cure incurable conditions.

“This model incorporates research showing that clinicians are emotional beings, like all people, and these emotions strongly impact their patients’ choices,” Duberstein said. “Doctors hate to ‘give up’ on patients, so they often recommend treatments with very little chance of success. That won’t change until we improve medical education and the culture of irrational biomedical exuberance.”

“Irrational exuberance” is a term that economist Alan Greenspan famously used to describe investor sentiment in the lead-up to the dot-com crash, but Duberstein and his colleagues said it has long affected doctors and patients as much as it has affected Wall Street. They read of one-in-a-million cures and irrationally believe that they or their patients will be that one in a million – just as people who purchase lottery tickets think they’ll be the lucky winners.

Pointing out the irrationality of the choice doesn’t affect doctors any more than it affects lottery players. Indeed, the researchers believe, it affects doctors less because, unlike gambling, which is often portrayed as a vice, the struggle to preserve life is typically portrayed as a virtue.  Motives to prescribe long-shot treatments are noble – to avoid death, save a life, “do all we can,” “fight a battle” and “never give up.” In this view, failing to prescribe long-shot treatments is tantamount to abandoning patients and, for patients, failing to try these treatments is tantamount to abandoning loved ones.

The authors, who also hail from Tulane, Rochester and Rowan, call for new approaches to clinical care and public education that will address the emotions that fuel useless treatments at the end of life. “At some level, every patient death is a potential source of shame for doctors and a source of guilt for surviving family members,” Duberstein said. “By changing the culture of medical education and broader cultural attitudes toward death, we can address the emotions and family dynamics that have prevented too many patients from receiving quality care in their final days and weeks of life.”

Complete Article ↪HERE↩!

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Want A Viking Funeral?

— Only State That Allows It Is Colorado

celtic, vikings, saxons, native americans, slavics…

By Mark Heinz

There’s a slim chance you legally shuffle off this mortal coil legally with as much flair as Darth Vader in “Star Wars: The Return of the Jedi,” but there’s no way you’ll get to depart this world like King Arthur in “First Knight.”

In the former film, the deceased Sith lord, still in his full black armor, is set ablaze atop a funeral pyre on land. In the latter, the body of the mythical king of Camelot is pushed out to sea in on a floating pyre, then one of his knights sets the vessel ablaze with a flaming arrow. 

It’s illegal to burn a body in a floating boat anywhere in the U.S., and a single town in Colorado is the only place in the country where you can legally burn a corpse on a dry-land funeral pyres.

No Wyoming Demand

The popular conception of what are commonly called “Viking” funerals – a flaming longship – aren’t historically accurate anyway, said Joe E. Pray of Pray Funeral Home in Charlotte, Michigan.

“They (Vikings) were more likely to drag the boat ashore and burn it on dry land with the chieftain’s body and his possessions inside, or just bury the entire boat without setting it on fire,” Pray told Cowboy State Daily. 

He and his family offer unusual or themed funerals.

And Wyomingites don’t seem interested in Viking funerals, regardless of whether they’re historically accurate or more fanciful, Joey Casada told Cowboy State Daily. He’s the head of the Wyoming Funeral Directors Association and funeral director at Jacoby Funeral Home in Rawlins.

“We haven’t heard of any requests for Viking funerals, open funeral pyres, the human composting or any of those sorts of things,” he said. “Most folks in Wyoming are apparently OK with the standard methods of cremation or burial in a casket.”

Pyres Offered In One Colorado Town

In the United States, open-air cremation is legal only in Crestone, Colorado, according to the US Funerals Online blog. However, only a handful of such pyre services are allowed each year, and they’re exclusively for Crestone residents.

And people might want to think twice about open-air cremation, Pray said.

“I’ve seen it, and it’s actually a gruesome process,” he said. “It’s probably not something I’d want to watch happen to a loved one.”

Original ‘Stairway To Heaven’

Pray said he learned about Viking burial practices during a trip to Norway – and the real thing didn’t match most people’s imaginations.

Contrary to popular belief, the mighty Northmen didn’t honor their dead by setting longships with bodies in them ablaze upon the fjords, he said.

Instead, when a Viking of prominence died, his body and possessions – sometimes including horses and livestock – were placed inside his grounded longship.

“They included all the stuff they figured the deceased would need for his journey to Valhalla,” Pray said.

Norse historians claim that in at least one instance, a deceased chieftain’s concubines were slain so that they, too, could accompany him.

Oftentimes, the entire thing was buried, Pray said.

“There still are some of those burial mounds around Norway,” he said.

In other instances, the ship was burned ashore. 

“The smoke from the funeral pyre was called the ‘stairway to heaven,’ so they (Vikings) came up with that long before Led Zepplin did,” Pray said.

It Wouldn’t Have Worked Anyway

Even if Vikings had wanted to burn their dead in floating longships, it wouldn’t have worked, Pray said.

“A boat on the water is just going to burn to the waterline and then stop burning,” he said. “We’ve seen that here on Lake Michigan when some drunk people accidently set their boat on fire. If we know that’s what happens, then the Vikings probably knew that too.”

For those who really want at least a facsimile of Viking honors, Pray said his funeral home offers burial or cremation vessels “that are shaped like a Viking ship.”

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