When to Move a Patient to Hospice

By Joseph Shega

As health care professionals, we innately want what’s best for patients. Of course, in order to determine the best possible treatment path, we must work together—not just with the full health care team, but with patients and their loved ones as well. Defining the goals of care requires deeply personal decision-making, and it’s our responsibility to help patients and their families understand their choices, and to honor their wishes with compassion
and respect.

For some patients with serious illness, especially those requiring home health care, there may come a time over the course of their health care journey when curative and restorative treatment no longer aligns with their values and end-of-life priorities. For these patients, hospice can provide tremendous relief and the kind of support they need at the right time.

To be clear, entering hospice is not about losing hope—it’s about giving patients a renewed sense of hope for
how they’ll be able to spend their final chapter of life.

Understanding the Benefits of Hospice Care
First, it’s important to distinguish the differences between home health and hospice care. The two modalities of care certainly share some similarities: Both are aimed at improving quality of life, allowing the patient to remain at home and receive important physical and psychosocial care while also helping prevent or reduce the need for hospitalization. However, each approach is meant to address distinct patient populations with unique needs
and goals.

Unlike home health care, which is intended to help patients recover from injury or illness or progress toward improved functionality, hospice care is for those with advanced illness for whom curative treatments are no longer effective or preferred. Patients are eligible when they have a prognosis of six months or less if their disease or illness runs its natural course, as certified by a physician; this approach to care is squarely focused on improving quality of life and prioritizing patients’ and families’ wishes during whatever time they have left.

Routine hospice care takes place wherever the patient calls home—a private residence, nursing home, assisted living community or residential care facility. Daily care is provided by a family caregiver, friend or private duty caregiver who is supported by an interdisciplinary team of hospice experts, including nurses, aides, physicians, chaplains, social workers, volunteers and bereavement specialists, all of whom specialize in compassionate end-of-life care.

Common hospice services include the delivery of medications, equipment and supplies necessary to manage the patient’s diagnosis. Covered by the Medicare Home Health Benefit, these services are— importantly—provided at no cost to the patient or family. Medicare also covers continuous, inpatient and respite care for hospice patients. In fact, hospice is the only Medicare benefit designed to titrate whatever care the patient needs in order to keep them in their setting of choice.

Home health services, on the other hand, do not cover inpatient stays if symptoms become unmanageable at home. Caregivers of those in hospice also receive access to additional layers of psychosocial support. Simply put, hospice care gives patients and their loved ones the peace of mind that comes with knowing their final days will be filled with specialized support and comprehensive, round-the-clock comfort care, without undue economic burden.

Identifying Hospice-Eligible Patients
Home health is ideal for patients who are stable or improving, but when a home health patient declines or fails to achieve therapy goals, it can take a significant emotional and financial toll on the individual and
the family.

Identifying hospice-eligible patients earlier in the progression of their illness can have a measurable impact on their quality of life and medical expenses. A 2020 Trella Health study found that hospice patients overall benefitted from significantly fewer unnecessary hospitalizations and reduced health care costs compared to patients who did not receive hospice.

This was especially true for patients who were referred to hospice earlier in their disease course (receiving at least three months of care) compared to late hospice patients (receiving fewer than two weeks of care). Patients who received early hospice care were 10 times less likely to be admitted to the hospital during their final month of life than their nonhospice peers, and emergency room visits were five times more likely for late hospice patients compared to early hospice patients.

That means earlier identification of hospice eligibility can actually help patients remain in their preferred care setting, which plays a large role in quality of life. After all, no one wants to spend more time in emergency departments and hospital rooms than they have to.

If you’re wondering whether a patient may be ready to transition to hospice care, consulting VITAS Healthcare’s hospice eligibility guidelines is a great first step. It may also help to keep these significant predictors of declining prognosis in mind:

  • Reliance on others for help with three or more activities of daily living, such as bathing, dressing, urine or bowel control, moving from one place to another, walking and feeding
  • Shortness of breath or fatigue at rest or minimal exertion
  • Emergency department visits or hospitalizations
  • 10% weight loss within six months or 5% in one month
  • Recurrent falls with injury
  • Decreased tolerance of physical activity
  • Complications related to Alzheimer’s disease/dementia, cardiac or lung disease, cancer or sepsis/post-sepsis syndrome

When a patient and their caregivers are struggling with these issues, it may be time to consider the transition to hospice.

Facilitating the Transition
For hospice-eligible patients, goals-of-care discussions are so important, yet many home health care professionals may feel ill-equipped to initiate these conversations. As advocates for patients’ well-being, it is incumbent upon us to speak up and present them with their care options. Keep in mind that an informed patient armed with choices and an understanding of their current health status ultimately feels more in control.

It’s important to take an approach that’s informative, but also empathetic and open to hearing the patients’ wishes and concerns. This should be a compassionate two-way dialogue. You may wish to broach the subject with open-ended questions, such as, “How has your health changed over the last year?” or, “What are your most important goals for your care?”

At VITAS Healthcare, we recommend the ‘SPIKES’ approach to ensure goals-of-care discussions are as patient-centered as possible and firmly rooted in respect:

  • Setting: Choose a private, comfortable and non-threatening atmosphere
  • Perception: Uncover what the patient and family think is happening
  • Invitation: Ask the patient what they would like to know
  • Knowledge: Explain the disease and care options in plain language
  • Emotion: Respect feelings and respond with empathy
  • Summarize: Recap and decide next steps

Home health care professionals who care for patients with advanced illness are uniquely positioned to shape patients’ end-of-life experience by helping them get the right care at the right time in their disease course.

Complete Article HERE!

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!

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!

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!

Death with dignity is not euthanasia

By Kristen Fuller, MD

We are dedicated to helping our patients, but there are limits to what we can do to help.

A clinic patient of mine was dying of pancreatic cancer. He was as orange as a pumpkin and had an implantable morphine pump for pain. He was in palliative care and hospice, and regardless of medications to help alleviate his symptoms, he was miserable.

His suffering was unbearable. He wanted nothing more than to pass away sooner, in peace, and no longer be in pain.

“‘This is not living,’ he told me. ‘I am just waiting to die.’”
— Kristen Fuller, MD

He voluntarily stopped eating and drinking, refused a feeding tube, and eventually developed severe psychosis. I consulted with his medical team members about offering him “death with dignity,” but they were uncomfortable with this.

He passed away on day 12 by starving himself. His loved ones were beyond scarred by this experience.

The COVID-19 pandemic has exposed the profound tragedy of people dying alone in hospitals, suffering and scared, without the comfort of their loved ones. The pandemic demonstrated modern medicine’s limits in relieving suffering and granting someone peace.

How can we best serve our patients in such situations?

Ways to help patients at the end

Medical aid in dying—also known as death with dignity—is the voluntary act (for both physician and patient) to help end the suffering of a mentally competent adult patient who is terminally ill with less than a 6-month life expectancy (hospice-eligible). The patient has the right to ask for a prescription medication they can self-ingest to die peacefully.

Individuals who want this end-of-life care option tend to be offended when it’s called “assisted suicide,” because they desperately want to live, but are going to die whether or not they utilize this avenue.

The Journal of Palliative Medicine published peer-reviewed clinical criteria for “physician aid in dying”—not assisted suicide.[1] The term “physician-assisted suicide” is archaic and stigmatizing to physicians and patients who have experienced death with dignity.[2]

In the US, death with dignity or medical aid in dying are explicitly distinguished from euthanasia.

Euthanasia, also called mercy killing, is administering a lethal medication by another human being to an incurably suffering patient.[3]

It may be voluntary (requested by the patient) or involuntary. Euthanasia is illegal in the US, but voluntary euthanasia is legal in Colombia, Belgium, Canada, and Luxembourg, and is decriminalized in the Netherlands.

History and guidelines

Medical aid in dying was first passed as legislation in Washington state in 2008, and has since become available for patients in Washington, DC, California, Colorado, Hawaii, Maine, Montana, New Jersey, Oregon, Vermont, and Washington.

Multiple safeguards are in place to prevent cases of abuse or coercion.

The patient must be deemed competent, two physicians must authorize the medication, and there’s also usually a 15-day waiting period between the first and second doctor’s approval before a medication is authorized.

Suppose the patient chooses to take the medication after authorization. They can ingest the pills at their chosen time, choosing the manner and location of their death—one last act of control in the face of a debilitating illness.

What does the AMA say?

The AMA adopted a neutral position on death with dignity in 2019, affirming for the first time that “physicians can provide medical aid in dying according to the dictates of their conscience without violating their professional obligations.”[4]

The Association stipulated that physicians who participate in medical aid in dying adhere to professional and ethical obligations, as do physicians who decline to participate.

Other well-known national medical associations that have taken a neutral stance on death with dignity by withdrawing their opposition to the practice include the American Academy of Family Physicians, the American Academy of Hospice and Palliative Medicine, and the American Academy of Neurology.

Empowering patients

According to the Oregon Health Authority, approximately one-third of patients who receive prescription medication to pursue death with dignity in Oregon do not take the medication.[5]

However, they are said to be relieved that they are in control at the end of their life, which helps alleviate some anxiety about potential suffering in their last days. Each patient should be empowered to make end-of-life care decisions based on their unique culture, beliefs, and spiritual values.

“The power should be in the patient’s hands.”
— Kristen Fuller, MD

Hopefully, we can be conduits to give our patients respect, autonomy, and privacy during their last days.

Complete Article HERE!

What an End-of-Life Doula Can Do for You

— Sometimes, you need help navigating your grief and the dying process

Death and dying aren’t always easy subjects. Conversations about your end-of-life desires and the legacy you want to leave behind can be particularly difficult for some individuals, as well as their family and friends.

If you’re diagnosed with a terminal illness, understanding how much time you have left and deciding how you’ll spend it can be difficult to navigate. For friends and family members — especially for young ones who’ve never experienced a death in their family — understanding what happens when someone dies can be confusing and challenging.

When we broach the topic of death, we’re forced to confront our own mortality and come to terms with what will happen to our bodies when we die. But when we face the death of a loved one, we’re confronted with a different set of challenges. Sometimes, we’re dealing with an impending death long before it happens. Other times, death happens swiftly and suddenly in the most unexpected ways.

No matter how someone dies, we each find different ways to grieve the loss of a loved one. Sometimes, we have to handle all the logistics around someone’s funerary services. And then, there are all the things left unfinished in the wake of that person’s death — their hobbies, their dreams, their bills and their responsibilities.

While dying can sometimes be a complicated experience, having help along the way to process your grief and understand what’s happening can make the act of dying more manageable. That’s where having an end-of-life doula can help.

Palliative medicine physician David Harris, MD, and end-of-life doula and social worker Anne O’Neill, LSW, CDP, explain how end-of-life doulas work together with palliative care and hospice teams, and exactly what you can expect when hiring an end-of-life doula.

What is a death doula?

Birth doulas and death doulas function like two sides of the same coin. A birth doula is a trained professional that assists someone before, during and after childbirth. They work alongside your healthcare team to provide emotional and physical support, education and guidance to make sure you have a positive birthing experience.

Similarly, a death doula — also known as an end-of-life doula, end-of-life coach, death midwife or death coach — assists a dying person and their loved ones before, during and after death. An end-of-life doula provides emotional and physical support, education about the dying process, preparation for what’s to come and guidance while you’re grieving.

“A doula wants to do as much as they possibly can to help facilitate what the person and their family need,” says O’Neill. “Doulas make sure the threads are connected between the dying person and the important people in their lives, including their hospice team.”

End-of-life doulas aren’t licensed to provide any medical assistance, but they may advocate for the dying person’s wishes and needs while working together with healthcare providers.

“There is value in having an interdisciplinary team, with the idea that different fields have different things they bring to the table,” notes Dr. Harris. “The best way to give great care to someone is to involve different viewpoints, different levels of expertise and different types of expertise. End-of-life doulas and religious leaders both fall into that framework.”

In recent years, as a result of the COVID-19 pandemic and the surge of related deaths worldwide, there’s been an increased interest in hiring end-of-life doulas to help those who were dying and those who were grieving. There’s also been an increased interest in people wanting to become licensed as end-of-life doulas.

“For many people who are approaching the end of life, being prepared and having everything in place for when they do die is a very important thing. They don’t want their families to be scrambling, and they have certain ideas about what they want their funeral to look like,” explains Dr. Harris.

“Usually, in palliative care or hospice, we give them the space and a listening person to help them plan out what they really want. For many, it’s not as much about finding a funeral home or finding resources as it is just a hard thing to talk about.”

And in many ways, the core function of an end-of-life doula is to be present and listen to the needs of the person who’s dying and the needs of those around them who are grieving.

“We don’t die twice. We only get one chance to do this,” says O’Neill. “When you’re bringing in a doula, you’re bringing in a wide range of experience and a real desire to want to be there with that person and to make it as good of an experience as it can be.”

What exactly does an end-of-life doula do?

Each dying person’s needs are unique to their specific situation, but the services offered by an end-of-life doula could include a mix of the following:

  • Providing the opportunity to talk openly and honestly about the dying process.
  • Alleviating the anxiety, guilt and shame often associated with death and dying.
  • Developing a plan for how the person’s environment looks, feels, sounds and smells.
  • Coordinating with family and friends to evaluate visitation.
  • Overseeing 24/7 care alongside healthcare providers like hospice and palliative care.
  • Providing education and guidance related to other medical services like do-not-resuscitate orders and healthcare power of attorneys.
  • Creating guided meditations and rituals specific to a person’s religious faith or spirituality.
  • Sitting vigil with a person as they near their final moments.
  • Assisting with obituaries and planning funeral services.
  • Providing supplemental grief counseling and companionship after someone has died.
  • Finding creative ways to honor the person after they’ve died, which can include the person who’s dying as a part of that process and exploring that person’s life and legacy.

“Our goal is to provide the kind of support people need so that families aren’t exhausted. We want families to have a chance to rest and we want to ensure that people who are dying are not unsafe at home,” O’Neill adds.

Part of that process is making sure the person who’s dying is aware of what’s happening and, if they’re able or they desire it, to give them the space to confront their own grief and be an active participant in their dying process.

“A dying person is grieving their losses, too. They’ll never see their partners again. They’ll never do the things they love again. So, the doula allows a dying person to express their losses,” says O’Neill.

Along the way, an end-of-life doula may help with what’s referred to as “legacy work,” a process O’Neill says is about exploring the most meaningful moments of someone’s life and finding ways to pass on their legacy. Sometimes, this looks like putting together a scrapbook of memories. Other times, it’s about making those phone calls and writing those letters to long-lost friends or siblings and finding closure in other ways.

“Doulas can help facilitate those conversations to make sure they tie up those loose ends and they’re able to say what they want to say before it’s too late,” she explains. “I had one gentleman who always wore flannel shirts his whole life. He and I cut the buttons off of his flannel shirts and made bracelets for his granddaughters so that they would have those to remember him after he died.”

And end-of-life doulas can extend their services to those loved ones who are grieving by providing education and resources along the way. Sometimes, that means a doula may have to call the funeral home to announce the death of the person who died and make an appointment for the funeral. Other times, a doula may just be on standby should the family need their support during the final hours of a person’s life and in the weeks or months after they’ve died.

“Our hearts have to fill back up again after such a loss,” notes O’Neill. “As doulas, we’ve come to know these families, so we are able to give them what support they need afterward. We don’t just close the book and say, ‘On to the next one.’”

What’s the difference between a death doula and hospice?

End-of-life doulas are similar to hospice care in that both offer counseling, spiritual support and other nonmedical services to help a dying person and their loved ones during their final days. The medical piece is what sets hospice care and end-of-life doulas apart because doulas are typically not licensed to provide any hands-on medical assistance. That said, doulas are fast becoming an integrated part of hospice care teams. If your hospice care team doesn’t have an in-house doula, if you decide to hire one, the hospice care team should work with them throughout the dying process.

“An end-of-life doula’s approach to care is very consistent with hospice care and they’re very synergistic,” says Dr. Harris. “Where end-of-life doulas excel seems to be advocating for people who are dying, planning and having some of those crucial conversations.

“The medical piece is just a small part of somebody’s end-of-life experience and we have to acknowledge, as healthcare providers, that sometimes the medical pieces aren’t the most important pieces. Sometimes, it’s connecting, from one human to another.”

What type of training or certification does a death doula have?

There are a variety of accreditations available to those interested in becoming an end-of-life doula. Although there aren’t universally recognized requirements for becoming an end-of-life doula yet, organizations like the International End-Of-Life Doula Association and the National End-Of-Life Doula Alliance offer training and certification requirements that include:

  • Reading required materials.
  • Completing a work-study or class.
  • Participating in a multiday training program or workshop.
  • Obtaining recommendations from healthcare providers and people they’ve assisted.
  • Following a strict code of ethics.

“Individuals and their families are very vulnerable when they’re at the end of their lives, so that ethical piece really needs to be there and needs to be pronounced,” stresses O’Neill.

Should you hire a death doula?

The decision to hire an end-of-life doula is a very personal decision, one that should be discussed with you and your family in the same manner of understanding and respect that any other end-of-life decisions should be discussed.

“It’s not easy being cared for. When you see your doctors, you’re expected to sort of be able to clarify and explain exactly what’s going on physically, emotionally, spiritually. At the same time, you’re not feeling well. So, that’s a really hard thing to do,” states Dr. Harris.

“Having somebody like a death doula who has experience taking care of people at the end of their lives and who has the time to sit and be with that person and help them figure out what’s going on can be really valuable.”

Complete Article HERE!

The toughest conversation

— Talking end of life with patients

By Kristen Fuller, MD

I saw my first code during my third year of medical school. A day later, I called my mom to discuss her last wishes if something tragic were to happen to her.

I did not want her to be that patient on the gurney being violently coded if that was against her wish. It took a few years of coaxing her into having these tough conversations with me, and after enough coercing (and having to deal with a few hair-raising medical issues), she told me exactly what she wanted to do when the time came.

I regularly try to talk about this with patients, even if they give me pushback, as I firmly believe that every person should have the power to make an educated decision on what they want to be done at the end of their life.

Despite our regular proximity to death, many physicians may lack the necessary skills to have direct, detailed conversations about code status, long-term prognosis, quality of life, and end-of-life care.

The last thing we want is for our patients to have to make these very emotional and difficult decisions in the last few months—or even minutes—of their lives. Or for their family members to be forced to guess their loved one’s end-of-life wishes after they’ve become incapacitated. But we can help them prepare for that time—provided we know how to do so.

They don’t teach us about death in medical school

During my medical school and residency, we didn’t spend much time discussing death, having end-of-life conversations with patients and families, how to manage pain or anxiety during the dying process, or the intricate differences between hospice and palliative care.

Nobody taught us how to approach or use advance directives, or when to discuss them with patients. Such terms came up in conversation and during rounds, but there was no teaching method or structured learning objective—or even conversations about them.

We learned how to have end-of-life family meetings while watching senior residents, whose styles and conversational skills were all over the map. Death was not a natural, omnipresent, physiological process but rather the unspoken consequence if we did our jobs wrong—almost like a failure.

Becoming comfortable with death

“Death is a normal part of life. Everyone dies and deserves to die with dignity, with the choice of how they take their last breaths.”
— Kristen Fuller, MD

Luckily, in my final year of residency, I had the privilege (after a lot of kicking and screaming) of taking three important elective rotations: palliative care, hospice, and pain management and rehabilitation.

During these months, I learned how to be comfortable with death and dying, appropriately manage pain in all its different forms, have difficult conversations with patients and families about these topics, and give myself grace and compassion when a patient dies.

These skill sets have tremendously helped me in my professional life—as well as in my personal life, as I am often the one having the difficult conversations on these issues with my family members.

Taking control

A Kaiser Family Foundation study reported that only 56% of adult Americans had a serious conversation about healthcare preferences, 27% wrote down their preferences, and just 11% discussed them with a healthcare professional.[1]

The most powerful thing patients and families can do to take control of their healthcare is to think through what’s most important to them if they become seriously ill. They should also identify a person they trust to represent them if they can’t speak for themselves.

It’s never too early to raise the topic

“I always encourage physicians and family members to ask questions about end-of-life care early on, as it’s never too soon to start talking about it—but there is a point where it may be too late.”
— Kristen Fuller, MD

During office visits, try to discuss code status and advance directives with the patient, and encourage family members to talk about it with each other.

Before asking these questions, you may want to discuss why you’re having this conversation. Perhaps you can offer a professional or personal experience you had with death when a patient or family member didn’t have any decision-making powers.

“I often tell patients about my first experience as a medical school student witnessing a code.”
— Kristen Fuller, MD

Here are some possible conversation starters:

  • What is important in your life? How would you like to be remembered?
  • What experiences have you had so far with death? What do you think death means?
  • What will happen when you die? Do you need to make any plans or choices now?

How to discuss end-of-life care

Choose a quiet, comfortable, private space to meet without interruptions (turn off your electronics). Ask your patient what they know about their condition and its prognosis so you can better understand their knowledge and mindset. The goal is for the patient to lead the conversation and tell you what they want to do.

If there are discrepancies between what you and the patient know about their situation, it’s your job to tell them the truth. Use plain language, speak slowly and clearly, and make sure they can hear and understand you. Then give them a few moments to process this information before asking if they have any questions.

Determine what your patient wants in the last years, months, or weeks of their life. How do they wish to take their last breaths? How would they like to spend their time? Do they want to be coded when their heart stops? Do they want to be readmitted to the hospital if their condition worsens? Would they want palliative or hospice care?

“It’s our job to learn and document the patient’s specific wishes. In doing so, we must be honest and educate the patient on the differences between hospice and palliative care.”
— Kristen Fuller, MD

Focus on realistic goals

An author writing in Family Practice Management provided insight on how to guide patients’ expectations about the end of life.[2]

“Redirecting the patient’s focus from ‘cure’ to a more reasonable goal, such as living long enough to complete certain tasks (healing relationships or witnessing certain events such as a wedding or birth of a grandchild) can be helpful,” the author wrote. “Even a pain-free death could be a goal.”

The author added that “it is possible to have both qualities of life and quantity of life,” as research showed that patients who receive hospice care live longer than those who pursue aggressive treatment.

Complete Article HERE!