Category: Caregiving

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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↩!

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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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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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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↩!

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Dying can be a taboo topic.

— Enter the death doula.

Laura Lyster-Mensh at Congressional Cemetery with a faux skeleton. She is the cemetery’s resident death doula.

‘It feels as if our culture is very afraid of death, and that’s not good for life,’ said Laura Lyster-Mensh, resident death doula at Congressional Cemetery in D.C.

By

A group of people gathered at Congressional Cemetery in D.C. on Saturday morning for an unusual reason: to practice dying.

One by one, participants reclined on a makeshift bed, as Threshold Choir — a local singing group that comforts people near the end of life — serenaded them.

The exercise was led by Laura Lyster-Mensh, Congressional Cemetery’s first-ever “death doula.” On Saturday, she held the inaugural “Death Doula Day” — the first in a series of weekly events at the cemetery to encourage people to talk openly about death.

It’s part of a nationwide death-positive movement — the idea that it’s healthy, rather than taboo, to talk about death and dying. In Mexico, for example, the Day of the Dead is an important tradition of remembering loved ones and “commemorating death as another element of life.”

Threshold Choir volunteers performed “song baths” to emulate the experience of people who are visited by the singing group at the end of their lives. The choir started off with a tune by its founder, Kate Munger, called “You Are Not Alone.”

“The room was spellbound and very moved,” Lyster-Mensh said. “We were all very present.”

For participants like Ariel Casey, it offered solace. She has lost six people in the past two years.

“Three to heart conditions, one to cancer, one to murder and one to simple old age,” said Casey, 42, who lives in Wheaton, Md.

When she saw a notice for “Death Doula Days,” Casey said, “I felt a call.”

The session was comforting, she said, adding that she plans to attend more Death Doula Days in the future.

In her new volunteer position at Congressional Cemetery, Lyster-Mensh is trying to make the subject of mortality more approachable.

“It feels as if our culture is very afraid of death, and that’s not good for life,” she said.

Lyster-Mensh will hold Saturday sessions for activities such as obituary writing and a card game called the Death Deck. There will be speakers, including Rosie Grant, who went viral for making recipes she finds on gravestone epitaphs, and plenty of cake for participants to eat.

“The idea is to come together and have courageous conversations about death, and then also enjoy life,” she said.

Lyster-Mensh became a death doula — which is also referred to as an end-of-life doula — about a year ago. Unlike labor doulas, who focus on childbirth, death doulas aim to ease the daunting dying process for people in their final days, offering emotional, physical and spiritual support. Death doulas do not address medical concerns, and they differ from hospice chaplains, she said, as they are not religious professionals.

“I hold people’s hands,” said Lyster-Mensh, who is also a writer. “That’s mostly what I’m needed for.”

Her decision to become a death doula came after her father and a close friend died in 2014, and in both cases, “they didn’t leave me messages. They didn’t sum things up,” she said.

“That prompted me to think about what people could do to have a good death, and leave things behind the way they would want them to be organized,” Lyster-Mensh said, adding that she believes some people fear death so much, it interferes with their appreciation of life.

Death doulas help people live out their dying days as they choose — whether that’s reflecting on regrets, calling loved ones to say goodbye or simply sitting still.

“I don’t think our job is to change their emotions, it’s to walk alongside them in their emotions, and let them be authentically them,” Lyster-Mensh said.

For dying people who don’t have someone to hear their thoughts at the end of their lives, it can be cathartic and calming to share them, even with a caring stranger.

To become a death doula, Lyster-Mensh took a month-long course, which covered vigil planning, rituals and ceremonies, active listening, signs and symptoms of dying and other death-related topics.

During her training, for instance, Lyster-Mensh learned that although the human instinct is to encourage others to eat and drink, if a dying person refrains from consuming anything, it’s actually “better for the body in a lot of ways,” she said, adding that animals behave similarly when they’re dying. “It’s a natural part of things.”

Similarly, if a dying individual no longer enjoys their favorite music, that’s a normal progression, too. “Music can sound different to people at the end of life,” Lyster-Mensh explained.

Valoria Walker, an end-of-life doula and an educator at the International End-Of-Life Doula Association, was Lyster-Mensh’s instructor — and is now her mentor. Walker taught her students that talking openly about death lessens the discomfort and unease around it, and that clears the way for people to think about their hopes for when it is their time.

“We can’t make informed decisions about anything unless we talk about it,” said Walker, who started a company called Doula by Destiny in 2016.

Last May, Lyster-Mensh began volunteering as a death doula in the hospice unit at Sibley Memorial Hospital. Since then, she has sat at the bedsides of about 100 dying people. While many reminisce about the past, others focus on the present moment.

Some people don’t want to talk at all, she said, and in those cases, she just keeps them company — which might seem insignificant, but her presence serves an important purpose, she said.

“I’ve had some very profound experiences with people and their families in those rooms,” said Lyster-Mensh, who volunteers at the hospice unit one day a week.

As Congressional Cemetery’s new resident death doula, she hopes to share her learnings with others.

At the next Death Doula Day, scheduled for Jan. 14, Lyster-Mensh will invite people to write their own obituaries. It’s supposed to encourage participants to get to know themselves better, and decide if, perhaps, there is something they want to change about their lives while they still can, she said.

“People don’t usually do that; they don’t usually sit down and tell the story of who they are,” she said.

Lyster-Mensh first joined the cemetery community in May 2021, after she and her husband moved to a new home about ten blocks away. She began volunteering as a gardener, and now tends to a plot for a family that died in the early 1900s.

“I fell deeply in love with this place,” she said, adding that she also joined the cemetery book club, among other activities. “I started volunteering for everything they have.”

She noticed there was not a space dedicated to openly discuss death at the cemetery, so she volunteered to fill the void.

Jackie Spainhour, the cemetery’s president, said she was elated.

“We’ve never really gone past the surface level of death conversations,” Spainhour said. “We are still an active burial ground, and there is a need in this area for people to have their questions answered.”

Death Doula Days are in addition to the cemetery’s regularly scheduled “Death Cafes” — which Lyster-Mensh is also leading as informal discussions, rather than planned activities.

Spainhour said she is most looking forward to seeing more people “relax their shoulders, and ease into conversations about death without the fear that is really prevalent today.”

Lyster-Mensh said she is hopeful that her Death Doula Days will encourage people to live richer, more purposeful lives.

“I know it sounds like it’s about death,” Lyster-Mensh said. “But it’s really about life.”

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How Hospices Can Support Families Seeking ‘Green’ Burials

By Holly Vossel

Hospices can assist terminally ill patients and their families who have questions about “green” burial options by connecting them with services like death doulas or by educating staff on those practices.

Interest in natural or green funeral and burial options has been growing year-over-year, according to the National Funeral Directors Association (NFDA). Around 60.5% of respondents in a NFDA 2022 consumer awareness and preferences survey indicated that they would be interested in exploring natural funeral options, a rise from 55.7% in 2021.

Respondents cited cost savings and potential environmental benefits as leading drivers of their interest.

Demand for natural burials also has grown among hospice patients and their families, according to Lee Webster, director of New Hampshire Funeral Resources, Education & Advocacy.

“I’ve definitely seen a growing trend of natural burials really appealing to a lot of people who are on hospice,” Webster told Hospice News. “A lot of people on hospice services want to run the whole spectrum of that holistic care and tend to be more open to the idea. They are finding a different way to do the disposition, recognizing that natural burials are less expensive than the traditional funeral burial or cremation services most of the time.”

Webster has co-founded organizations such as the National End-of-Life Doula Alliance (NEDA), the Conservation Burial Alliance and the Funeral.org partnership. Additionally, she has served in leadership positions at the National Home Funeral Alliance and the Green Burial Council.

Natural burials are another way for families to take care of the dying in “the least invasive way possible,” according to Webster. “Much like hospice, it’s a continuum of creating a seamless transition to death” she said.

Though natural burials represent roughly 5% of all funerals nationwide, nearly three-quarters (72%) of cemetery operators have reported increased demand for these services, according to NFDA.

The global green funeral market reached $571.54 million in 2021 and is anticipated to reach an 8.7% growth rate by 2030, according to 2022 projections from Emergen Research.

As more hospices partner with death doulas, they can leverage those collaborations to help families and staff understand the four pillars that define a natural burial, Webster said. Death doulas also can help hospices connect families with natural burial resources and services.

One pillar is the use of biodegradable materials or containers that are designed to reduce carbon emissions and deforestation associated with traditional caskets made of wood, plastic and cement mixtures.

The other three pillars include the use of natural, noninvasive preservation methods instead of chemical embalming practices; avoiding the use of vaults and completing burials at 3 ½ to 4 feet.

Patients and families seeking these also need to understand state laws and limitations around natural burial methodologies.

Human composting, for example, is only legal in six states, according Lauren Carroll, co-one of the founders of Deathwives, a death doula provider. Additionally, water cremation is only available in 26 states, she added.

Death doulas can help expand hospices’ knowledge around their local natural burial options that they otherwise might not have built into their staff education and training, Carroll said.

“[The] knowledge aspect of understanding that comes from death doulas isn’t something a hospice necessarily has a place for in its staff education,” Carroll told Hospice News. “That education aspect is the biggest part of communicating all these different burial and funeral options to families so they have a better understanding.”

Hospices can help the family by preparing the necessary documentation bereaved families will need to arrange a natural burial, according to Webster.

“Each state has different requirements about when death certificates need to be filed and when families are able to bathe, dress and prepare their loved one for a natural burial,” Webster said. “Another important thing to know is that the hospice is not liable for anything that the family does with the body after they’ve signed that death certificate.”

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Choosing a Hospice Provider

— What Families Need to Know

Caring for a family member during the last months of life is a loving and formidable task. Families need reliable, knowledgeable caregivers to ensure their loved one’s comfort and dignity are maintained. Forming a partnership with the right hospice provider is critical.

BY Terry Ann Donner, RN, BSN, JD, CCM, CSA

  • Studies have shown that many for-profit hospice providers have few trained staff, offer fewer services, and seek patients who need less care.
  • Non-profit hospice providers have charitable missions; they are also more likely to have inpatient units, provide more complex care, and often seek additional accreditation and staff training.
  • Medicare’s Hospice Compare website provides family recommendations and survey scores for three quality indicators for hospice providers.

The lay of the land

Hospice is the end-of-life care that addresses the physical, psychosocial, and spiritual needs of terminally ill patients and their families.To qualify, patients must be certified by a hospice medical director and/or attending physician as having a life expectancy of six months or less.

The Medicare Hospice Benefit initially served mainly cancer patients.The patient population has changed significantly, with dementia patients representing almost 21% of the hospice enrollees in 2019.

Over the last three decades, the hospice delivery system has changed from being dominated by non-profits, to a system where almost two-thirds of providers are for-profit.

Medicare pays hospice providers a per diem or daily rate.This may encourage providers to limit services or to seek patients with less needs who stay enrolled longer.

For-profit vs non-profit hospice providers

For-profit providers generate a monetary gain for investors. Private equity firms often provide 10%–30% of the funds to purchase the hospice. The remaining funds are borrowed, creating pressure to generate profits to pay back the investors and loans. Non-profit hospice providers use profits for additional patient services, staff training, charity care, and employees since they have a charitable mission.

The U.S. Government Accountability Office documented that, from 2014 to 2017, patients in for-profit hospices were less likely to receive a hospice visit in the last three days of life. While a 2019 report for the National Partnership for Healthcare and Hospice Innovation showed non-profits provided more nursing, social work, and therapy visits.

Furthermore, for-profit hospice providers were found to have longer lengths of stay, but also discharged more patients before death since the care costs usually increase in the last weeks. They also had profit margins seven times higher than non-profits and were found to spend less than half the amount spent by non-profits on family bereavement services.

Choosing a hospice provider

A provider’s business structure does not tell the whole story. Good and bad providers exist in both categories. However, determining whether a provider is for-profit or non-profit can help families focus on the type of care questions they should ask. Families want reassurance that loved ones will receive individualized services from trained staff. Asking family, friends, and healthcare providers for hospice recommendations is a good place to start.

Families should ask friends, family, and healthcare professionals what hospice providers they have engaged. It is also important to check the Medicare Hospice Compare Website for information on the provider’s business structure, care recommendations, and quality ratings. Families can use this information to develop other questions regarding the care they and their loved ones will receive.

FAQ

We have talked with three executives at Hospice of the Western Reserve, a non-profit hospice operating in Ohio since 1978. Below, you will findprofessional opinions about what you should know when choosing a hospice provider. The answers were provided by Robert P. Phillips-Plona (Director of Inpatient Services and Facilities), Judy Bartel,MSN, ACHPN, CHPCA, FPCN(Chief Clinical Officer), Mary Kay Tyler,MSN, CNP, CHPCA(Chief Quality Officer).

Does the hospice provider have accreditation beyond Medicare certification?

Medicare’s Conditions of Participation are basic standards of care. Hospice providers are surveyed every three years and there are no penalties for substandard care.

Do bedside staff, physicians, or advanced practice nurses have specialized training in end-of-life care?

Bedside staff can be certified in end-of-life care through two national organizations (Hospice and Palliative Credentialling Center or National Center for Death Education). Physicians and advanced practice nurses can complete a Hospice and Palliative Medicine fellowship program to further hone skills.

How are family or patient complaints handled?

Families and patients should have access to an administrator 24/7 if an issue is not resolved by the care team.

Does the provider have an inpatient unit for critical needs that cannot be handled by the caregiver at home?

Mainly non-profit hospices have inpatient units. Most for-profits do not have such units because there is no Medicare reimbursement for room and board. For-profits contract with hospitals or nursing homes to provide a room and daily care to save costs.

How do hospice providers in my area compare?

Medicare’s Hospice Compare website helps determine which providers have received favorable ratings (one to five stars) from families who have used their services. Although a bit dated, the site also provides scores for three Quality of Care indicators, rating these scores above or below the national average.

How will my loved one’s plan of care be developed and reviewed?

After a comprehensive assessment, care needs should be reviewed at least every two weeks by an interdisciplinary team consisting of the patient’s physician, nurse, social worker, and pastoral care expert. Bedside staff should be trained to identify needs outside the scope of their care, so issues are not missed.

If family or the patient calls in the middle of the night with a question or care need, how does the on-call system work?

Medicare Conditions of Participation require a 24/7 call response system. After the primary care team goes home, the call center must have trained staff to answer care questions or arrange for a visit by an after-hours nurse.

How can hospice help a family member transition from a caregiver role?

Once informed the family member wants to relinquish caregiving duties, the interdisciplinary team should develop a care schedule that clearly delineates what will be provided, and when care will be updated. This helps the family determine where they need to supplement hospice care with private caregivers or friends.

What emergency care can be provided for your loved one?

If a loved one has an emergency, loss of electricity to run an oxygen concentrator or ventilator, or has no heat, it is important to know if the hospice provider can help arrange timely transportation to a safe inpatient unit or other facility.

What types of bereavement support is available to the family after a loved one passes?

Medicare requires 12 months of bereavement support. It may make a difference to the family if the support is offered through phone calls, in person or via support groups.

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