Category: Preparing for Death

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What Oncology Nurses Should Understand About Medical Aid in Dying

Lisa Vigil Schattinger, MSN, RN, discusses her experience with medical aid in dying, and what oncology nurses need to understand when supporting patients at the end of their lives.

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For patients with cancer who are at the end of their life, being afforded the same level of autonomy in death as they experienced is life can be a vital component in providing quality care for the patient and their family, according to Lisa Vigil Schattinger, MSN, RN.

Schattinger is the founder and Executive Director of Ohio End of Life Options, a nonprofit organization that advocates for and provides education on medical aid in dying laws. In addition to being a nurse advocate, she also brings a unique personal perspective to her career.

Schattinger’s stepfather electively chose medical assistance in end-of-life care under Oregon’s Death with Dignity Act1 after he received a myelodysplastic syndrome diagnosis and learned he was not eligible for blood marrow transplant. He opted not to start chemotherapy but enrolled in hospice and received palliative packed red blood cell transfusions before electing to pursue a medically assisted death.

Her stepfather’s death was incredibly peaceful and in accordance with his wishes: he was able to walk himself into his room, sit down on the bed, and be surrounded by family as he took the medication.

“He felt empowered,” she recalled, noting that the family was grateful that the state of Oregon had allowed them this option.

At that moment, Schattinger and her mother, who is also a nurse, recognized that this option is potentially groundbreaking for certain patients and their families. As a result, they decided to learn more about the processes in place and to share their own personal experiences. Recently, the duo presented on the topic at the 47th Annual Oncology Nursing Society Congress , specifically on the role of oncology nurses in end-of-life care and the key components of medical aid in dying (MAiD) or dying with dignity laws.

In an interview with Oncology Nursing News®, Schattinger provides a quick overview of her presentation and key takeaways for nurses seeking to provide quality care.

Oncology Nursing News®: Please provide a brief overview of medical aid in dying.

Schattinger: Medical aid in dying is a law that allows terminally ill and mentally capable adults the ability to request a prescription that will hasten their imminent death. The process is patient directed; it is a voluntary process that has multiple safeguards. It is for an [individual] who understands that they are at the end of their life, understands that they are dying, and wants to determine the time and the place and [the company present] at the end of their lives.

Each state can determine if they are going to pursue the process of passing an aid [with the establishment of a] dying law or medical aid in dying law. The first one that [was passed] was in Oregon, and it is called the Death with Dignity Act. I always consider that one as kind of a baseline. As other states passed [similar] laws, they put their “thumbprint” on that law— they made it work for their state.

Currently it is legal in Oregon, Washington, California, Hawaii, Colorado, New Mexico, Vermont, Washington, DC, New Jersey, and Maine. [In addition], there was a Montana State Supreme Court decision that allows [MAiD], but it is not exactly the same as in places that have actual laws.

[To qualify], patients have to be capable of making decisions. If there is any concern that the person is not capable of making decisions, then they can be referred for a mental health evaluation. Then there are timeframes in place [these vary by state, as well]. A patient also needs a written request that is witnessed by 2 people, of whom at least 1 cannot be related to or benefit in any way from the person’s death. Then, after qualifying for the prescription, they must wait 48 hours before filling. Patients must also be able to self-administer the medication.

Anybody involved in this process can opt out at any time, physicians, pharmacists, nurses, [or] any other care provider can opt not to participate [in the process]. Of course, the patient themselves can change their mind at any time and stop the process as well.

It is also important to note that when a physician gets this request, they must inform the person of all [available end-of-life options], including hospice care.

[Interestingly] we have learned that [approximately] a third of the [individuals] who get this prescription never end up taking it. There are a combination of things going on there. [Some] say that they can relax knowing that they are able to determine if [and when] their suffering becomes too great. Others, [unfortunately,] do decline in health. And [those] who are not able to self-administer, are no longer capable of making that decision.

Should oncology nurses only be familiar with these laws if they live in a state where it is legal? How might nurses support a patient who wants MAiD, yet lives in a state where it is not an option?

The American Nurses Association put out a statement saying that because so many people now have access to this option at the end-of-life that they feel nurses are ethically bound to be knowledgeable about it. This means being able to have non-judgmental conversations about MAiD, and to be able to [inform individuals] about what end of life options are available [including hospice care and pain management].

So if, as a nurse, you live in a state without a [MAiD] law, and someone asks you about it, [best practice] is taking a moment to really focus on that person and that request and ask: What does this mean to you? What does that request mean to you? Do you understand what all your options are for care at the end of life, and that we live in a state that does not have a law?

Then, if [end-of-life medical assistance] is important enough to patient, they [might consider if they’re willing] to move to a state with a law? This is a very big question. At the end of a person’s life, that is a really big step: to decide to pull out roots from their community, their community of support, and their healthcare community of support, and move to another area, to go through the process of establishing residency–depending on where you’re living—and finding 2 doctors who will participate in this program [is a big commitment].

However, some will decide that it is important enough to them and they do want to do that. But others [will not] and so everyone needs to understand what end-of-life care options are available to them. It is important to have that full conversation to understand that their personal beliefs, values, and goals are, and to see what types of care match their needs, as well as what is available in their community.

What are some misconceptions or things that nurses may not understand about MAiD that makes it difficult for them to support it?

A lot of times [individuals] do not understand [how it is] a self-directed process. This is the patient who wants this and it is vital that they determine what the end of their life looks like.

I remember a person who said, “When I got this diagnosis years ago, I knew that my treatment options would probably run out at some point. So, I became a partner with my health care team in making medical decisions moving through the course of my illness—I made decisions on what type of treatments [I took], what surgeries, and everything else that was possible.” When it came time for [the health care team] to say, there are no longer treatments for you, [the patient] said, “I made all of those decisions as a partner up to that point, why would it change?”

Please elaborate on the ethical value of medical aid and dying and the impact that it does have on the patient.

I think that concept of autonomy and self determination to some [individuals] is paramount. Its who they are. They want partners in their health care [team] who will work with them to provide that care. Some health care providers also believe that providing compassionate care is one that meets the [patient’s] goals.

Ultimately, the concept of suffering is for the patient to determine, not for us to judge.

Until we get to know these [individuals] and fully [understand] why they are making these requests [we cannot fully understand their needs]. Whatever a patient’s definition of suffering is, compassionate care means granting their requests to manage it.

Complete Article ↪HERE↩!

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A word about the word too many of us are afraid to say

Hospice care is a necessary part of life


By Mary Mitchell

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light …
  — Dylan Thomas

It’s time to call hospice something else.

According to the American Cancer Society, hospice is “a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced life-limiting illness.” That organization describes hospice as “compassionate care for people in the last phases of incurable disease so that they may live fully and comfortably as possible.”

But hospice, as well as palliative care, the specialized care for people with serious chronic diseases, has gotten a bad rap.

Although hospice has been around since the 1980s, prevailing myths prevent families from accessing the help they need to provide their loved ones with quality care as they “rage against the dying of the light.”

For instance, a persistent myth is that hospice is a place and can only be provided in a hospital or nursing home setting. Not so. About 70% of hospice care takes place in the patient’s home. And while half of hospice patients nationwide have a cancer diagnosis, the other half have other diagnoses, according to the American Hospice Foundation.

Other myths include: Medicare won’t pay for it. But Medicare beneficiaries can use their Medicare hospice benefit anytime. Another common myth is once you are in hospice you can’t get out alive. The truth is, patients are free to leave hospice and return to treatment if they choose.

After all, miracles do happen.

But death is certain.

We don’t know when it will come for us. But we know it is coming.

Still, for many, the very mention of hospice is enough to destroy relationships.

Maybe it is time to rebrand and educate the public about what hospice really is.

The concept of specialized care for terminally ill patients began with the work of Dame Cicely Saunders in 1948.

“During a talk at Yale University, Saunders, who earned her medical degree in 1957, showed pictures of patients who were terminally ill with cancer before and after receiving ‘hospice care.’ The difference in the patients’ appearance and overall well-being was remarkable.”

Still, it was almost 30 years before the Medicare Hospice Benefit was enacted, and states were given the option to include hospice in their Medicaid programs. Hospice care was made available to terminally ill nursing home residents as well, according to the California Hospice and Palliative Care Association (CHAPCA) website.

What a blessing.

Because in the midst of the prayers and the tears, I want to make sure my loved one is not suffering the shrieking pain that my mother said her mother suffered as they lay dying from inoperable cancer.

Despite the many benefits, a lot of eligible families have rejected hospice. In fact, a 2019 study published in the Journal of the American Geriatrics Society estimated “2,700 Americans a day experience non-sudden deaths without the benefits of hospice, and the utilization rate was only 52.4%.”

“The fact that Medicare pays 100% of hospice costs should be a big inducement, yet many who are eligible do not take advantage of end-of-life services,” according to an article on Debt.org titled “Hospice Costs and End-of-Life Options.”

It is time to rebrand and rename hospice care or at least launch a public awareness campaign to debunk the myths about this program.

Hospice is a way to provide quality care for someone who is suffering from an illness that medical science is not yet able to cure.

Tragically, the stigma surrounding this life-affirming treatment is depriving thousands of families from getting the care that could make the inevitable a lot easier to bear.

Complete Article ↪HERE↩!

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‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.

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Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article ↪HERE↩!

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Preparing Yourself or a Loved One to Die at Home

by Ray Burow

Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.

If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.

Why some people prefer to die at home

Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.

People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.

Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.

How to prepare for a death at home

Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.

Advance directive

An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.

When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.

Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.

Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.

Following death

Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.

There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.

Complete Article ↪HERE↩!

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We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article ↪HERE↩!

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Home-Based Palliative Care Can Improve Quality of Life

Relieving a patient’s symptoms and providing support to caregivers is the goal. It’s a beneficial program, but cost is a factor.

By Lola Butcher

Cleve Hart of Pollock Pines, California was about to be discharged from the hospital when a social worker suggested that he might benefit from home-based palliative care. At the time, he and his wife, Toni, were unfamiliar with palliative care — an array of supportive services for people with serious illnesses — but they have benefitted greatly from those services for the past three years.

Cleve has been diagnosed with dementia, kidney problems and cancer. A nurse comes to their home once a month to check his vital signs.

“And she makes suggestions — like, if he’s not eating well, she suggests things that maybe would increase his appetite,” Toni says. “They just try to make him as comfortable as possible.”

Meanwhile, Magen Fregoso, a social worker at Snowline Supportive Care in nearby Sacramento, California, has directed the Harts to various resources for financial and other support — for example, a place to get adult diapers at no cost — that make their lives easier.

“They might sound like little things, but they’re big things to us, you know?” Toni says.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain.”

For her, just knowing that the palliative care team is available for immediate advice is a huge comfort.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain,” Toni says. “And they right away tell me, ‘Yes, you should take him to the hospital,’ or ‘No, give it a couple hours and see how it goes.’ They just counsel with us and that’s a great relief for me to know what to do.”

That’s the goal of home-based palliative care, said Susan Enguídanos, associate professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California. By relieving a patient’s symptoms — pain, shortness of breath, constipation, anxiety and others — and supporting their needs, whether that’s meal preparation or grooming or emergency advice, the home-based team makes life better.

Over the past two decades, her research has documented that patients who receive home-based palliative care services have fewer emergency department visits, hospital inpatient days, skilled nursing stays and physician visits than similar patients who do not receive that extra support.

The total cost of their medical care, including the palliative care services, is significantly less; patients report greater satisfaction with their care; and they are more likely to die at home, as per their wishes, than patients in a comparison group.

Nonetheless, home-based palliative care is still not available for most U.S. patients. In an interview with Next Avenue, Enguídanos explained why.

Next Avenue: What is home-based palliative care?

Susan Enguídanos: The vast majority of palliative care is provided in the hospital. That typically happens when a patient has a very serious condition and needs help deciding what kind of care they want or help with pain management. They would only have access to that palliative care team until they are discharged from the hospital. At that point, if they’re lucky, they might be referred to an outpatient palliative care clinic.

Home-based palliative care is really the only place for continued access to palliative care unless you have enrolled in hospice because your doctor believes you are in the last six months of life.

What is the difference between hospice and home-based palliative care?

Both hospice and home-based palliative care provide symptom management, psychosocial support, pain control, education and caregiver support to meet a patient’s medical, social and spiritual needs.

But they are completely different in this way: Hospice is for people who are actively dying and who do not want to pursue aggressive treatment for their medical problems. Home-based palliative care is for people struggling with a serious illness but who are not actively dying and, in fact, may be undergoing treatment with the goal of recovery.

So every seriously ill person is eligible for home-based palliative care?

Unfortunately, that’s not the case. The biggest problem is that Medicare does not pay for home-based palliative care. Because there is no consistent funding, there is no standardization as to what these programs look like or who can receive services.

“The first thing is to check with your insurance company. Just say: ‘I am interested in home-based palliative care and can you help me?'”

California is one of the best states in providing home-based palliative care. The big Kaiser Permanente health system here serves a huge number of patients through its program. They know the evidence shows that it is good for patients and it’s also good for their bottom line.

Outside of that, things are a little iffy, even in California. Blue Shield of California (one of the biggest private insurers in the state) started paying for home-based palliative care about four years ago. Individuals covered by a Medicaid managed care plan can access the services, and some commercial insurers or medical groups may offer it, but each program looks a little different.

Home-based palliative care is also available in other states, of course, but there’s a lot of variation depending on who is providing the services and who is paying for it.

How can a patient or caregiver find out if home-based palliative care is available?

The first thing is to check with your insurance company. Just say: “I am interested in home-based palliative care and can you help me?” The second thing is to ask your doctor. But you should be aware that some physicians have no idea what palliative care is, let alone home-based palliative care. So they might not know how to refer a patient to a program.

If those two steps don’t lead to anything, look online to see if there are local providers of home-based palliative care in your community. Here in California, some programs have a cash-pay option for people whose insurance does not cover home-based palliative care. And there are some agencies that have a charity aspect that supports some patients.

Complete Article ↪HERE↩!