In New Doc ‘Last Flight Home’, a Film-Maker’s Dad Gets His Final Call

— Ondi Timoner’s sweet, sad film about her father shows what a good death can look like

by

You have to be in a certain mood to watch Ondi Timoner’s new documentary, Last Flight Home, which plots out the final 15 days of her 92-year-old father’s life. Hmm, do you want to zone out to a Parks and Rec marathon tonight, or watch a family come to terms with their patriarch’s decision to instigate an assisted death and end his overwhelming physical exhaustion and pain? It might be a hard sell, but for those who can bear to think a little deeper about the nature of existence – and the end of existence – the rewards are rich.

As the film opens, we join the Timoners in the aftermath of what we can only imagine to have been a long and difficult conversation: whether or not to support Eli – who was paralysed in 1982 and is now suffering from congenital heart disease and having difficulty breathing – in his decision to take advantage of the California End of Life Option Act. (There’s no debate about how Eli feels, as he somewhat starkly puts it: “I just want to be in the ground.”)

This content is imported from YouTube. You may be able to find the same content in another format, or you may be able to find more information, at their web site.

By the time we meet them, Eli’s wife, Lisa, and their three grown-up children, Rachel, David and Ondi – who made her name as a film-maker with the very different but also surprisingly intimate documentary Dig!, about the divergent paths of two 1990s indie bands, the Dandy Warhols and the Brian Jonestown Massacre – have come round to his way of thinking, and are going to give their father the best send-off they can. All Eli has to do is tell the doctor his decision, and a 15-day countdown – which serves as chapter markers for the film – to his legally self-administered fatal dosage begins.

What happens next is quite extraordinary, and raises so much that is valid and instructive about how we live and how we die that it’s hard to know where to begin. In a series of Zoom calls and reunions at the bedside of the couple’s home in Pasadena, California, Eli says goodbye to the people who have meant something to him in his life. His colleagues, his friends, his care-givers, his extended family. He tells them he loves them, they tell him they love him right back. He fine-tunes his obituary, and makes quips about his bunk-bed style burial plot, in which he’ll await his wife’s arrival: “That’s heaven. I love Lisa on top.” What a thing, to look death in the eye and still make terrible dad jokes. Eli must be some guy.

And it turns out he is, or was. Now we get Eli’s back story, the part that Ondi is so keen to relay (something that Robert Downey Jr is also doing for his dad in his forthcoming Netflix documentary, Sr). Having set up an airline, Air Florida, in 1972, Eli became a hugely successful businessman and personality (that picture of a young King Charles looking bashful in a polo shirt? Zoom out and it’s Eli and Lisa flanking him on either side) only to overstretch himself and lose it all. We also find out more about the circumstances of his paralysis (it happened, somewhat shockingly, because of a massage), which caused a huge shift in the dynamics of the family as Lisa and the children rallied around to support him as he had once them.

film maker ondi timoner with her father eli in the days before his death
Film-maker Ondi Timoner with her father, Eli, in the days before his death

What makes the film so bittersweet, is that while Eli’s family is saying goodbye, we as viewers are just getting to know him: getting familiar with the nuances of his relationships with his children, who are inspirationally – and to frigid English sensibilities, a little freakishly – demonstrative of their affection for him; getting a sense of his steady morals and kind heart (OK it’s not the most objective biography, but you’re prepared to let it slide); getting the odd exasperated aside from Lisa, a Bronx native, who raises her eyebrows to the camera as Eli, with just days to live, listens to a droning automated voice read out a list of his bank transactions.

And although the film makes no attempt to discuss the rights or wrongs of assisted suicide – it’s just not what’s being explored here, and that’s fine – you can’t help thinking, as the days tick closer, that Eli’s done something right. He’s got to see his children honouring him in the ways they are best able – David’s written his obituary; Rachel, a rabbi, is preparing his funeral; and Ondi is making this film – and, courtesy of some poison in a plastic glass with a drinking straw, he’s going to be able to show himself to the door. It’s hard, it’s sad, but you can’t help feeling that there are lessons to be taken from the Timoner family’s experience, and that, ultimately, a good death was had by all.

Complete Article HERE!

Queering the Good Death

When it comes to protecting chosen family, LGBTQ couples face unique struggles.

By Sara Harrison

Before he met Charles Koehler—and before he married a woman, got divorced, and came out—Dennis Hostetler was a college student who needed money. In the summer of 1962 he began working in the W.R. Grace mine, cleaning the tools used to drag vermiculite ore out of the ground. The shiny, flaky mineral would be refined at the plant, and when heated, it would balloon into puffs that could insulate buildings. Libby, a town in northwest Montana, was a beautiful place, but Hostetler had bigger ambitions, so he took the $1,443.72 he’d made and got the hell out.

But pieces of Libby stayed with Hostetler, buried deep in the outer lining of his lungs. He unwittingly carried toxic mineral fibers from the mine to college in Missoula, to the Peace Corps in Tunisia, to Paris’ Left Bank, and to St. Louis, where one day, at age 67, he discovered he was dying. After experiencing fatigue, chest pain, and shortness of breath, Hostetler was diagnosed with mesothelioma, a deadly cancer probably caused by inhaling asbestos that tainted the vermiculite he mined. In 2009, a year after Hostetler’s diagnosis, the Environmental Protection Agency declared a public health emergency in Libby and initiated a massive cleanup effort that’s still ongoing. Hostetler had no illusions about what came next—he needed to put his affairs in order.

Death is an inevitable fact of life that most people prefer not to discuss. According to a 2012 survey by the California Health Care Foundation, 60% of Californians said that when they die, it’s very important to them not to burden their families with tough decisions. Despite that, more than half of the respondents hadn’t communicated their end-of-life plans with the people they wanted making decisions for them. Some were too busy with other things to think about it; others said thinking about dying made them uncomfortable. But having those conversations can make the experience better for the person dying. There’s less regret about what might have gone unsaid, and less anxiety and confusion for caregivers because they know their loved one’s wishes. Numerous studies have linked conversations about death to better, more peaceful deaths. 

For members of the LGBTQ community, dying without the legal protections of a living will or power of attorney could mean spending their final days without the support of the people who love them. A 2010 study by the National Gay and Lesbian Task Force Policy Institute found that LGBTQ elders are twice as likely to live alone and four times less likely to have children than their straight counterparts. That means their caregivers are often friends, exes, or chosen family who aren’t always recognized by the medical and legal systems. “There’s no automatic protection in place to make sure that someone can choose the person that’s going to be making their [end-of-life] decisions,” says Kimberly Acquaviva, a professor of nursing at the University of Virginia who specializes in palliative and end-of-life care. “You have to put those things in writing.” Before same-sex marriage was legal, there were horror stories about families swooping in and making medical decisions that didn’t accord with people’s wishes. “Those things still happen,” she says.

Charles Koehler, wearing a blue polo shirt, holds a black-and-white photo of his late husband, Dennis Hostetler, at age 68. He is standing outdoors, with trees and foliage visible in the background.
Charles Koehler holding a photo of Dennis Hostetler at age 68.

A Better Way to Die

Hostetler met his partner, Charles Koehler, in 1984. While the two could never have prepared for how their relationship unfolded over the next two decades, they always had a plan for death. Before Koehler met Hostetler, he’d read the 1969 bestselling book Everything You Always Wanted to Know About Sex* (*But Were Afraid to Ask) and decided it would be better if he wasn’t gay. The book told him gay people led awful lives, an idea affirmed in an abnormal psychology class where he learned that homosexuality was in the Diagnostic and Statistical Manual of Mental Disorders. 

If homosexuality was classified as a mental illness, then Koehler reasoned that it too must be a diagnosable disorder. But then Koehler actually met some gay men and realized their lives were just as varied as anyone else’s. Even then, it took years for Koehler to accept himself; when he did come out at age 27, he thought his life would remain solitary. “I had no idea what was possible,” he says. “I assumed that I would be basically closeted.” Both Koehler and Hostetler were hesitant when they met. Hostetler, who was older by a decade, had two daughters he still wasn’t out to. When Koehler moved in, Hostetler told the girls he was just renting a room. But in time they came out to Hostetler’s daughters and ex-wife. 

When two of their lesbian friends asked them if they’d consider donating sperm so they could have children, both men obliged. At first the men agreed to just be “uncles” to the children, but eventually the moms wanted the boys to know who their fathers were. “We had to do DNA testing to find out who was whose,” says Koehler. “The boys were really excited for about five minutes and then they wanted to go outside and play games.” Koehler began volunteering in a program that provided support buddies to men living with HIV and AIDS. He watched a man die and then watched the man’s partner get thrown out of the home they shared. Though the house was owned by the man who died, there was no will to ensure his partner could keep it. “The family came in, took everything, kicked the kid out on the street,” Koehler says. 

Afterward, Koehler and Hostetler—who were both healthy at the time—drew up documents specifying what should happen to their assets in case of death. Now, there are academics and organizations helping LGBTQ people make clear, concrete plans for death. In doing so, they’re modeling a better way to prepare for, think about, and embrace death. Sherrill Wayland, who directs operations at the National Resource Center on LGBTQ+ Aging, saw many of their older friends struggle to get the care and support they needed at the end of their lives. “It was really personal for me,” they say. “No one should die alone if they want support.” In their role, Wayland has helped create a series of guides to help LGBTQ people plan for serious illness and caregiving. 

Sage USA, an advocacy organization for LGBTQ elders, is also pushing for cultural competency training in long-term care facilities. Compassion & Choices, a group that champions the importance of end-of-life planning, has LGBTQ-focused programs like Pride in a Box, which encourages people to take time during Pride Month to talk about how they want to die. These conversations can seem at once ghoulish and mundane: Do you want to be cremated or buried? Do you desire an open- or closed-casket funeral? What clothes would you like to be buried in? What pronouns should appear in your obituary? “LGBTQ people have realized that if we don’t make a plan, things are probably going to go sideways because other people won’t be looking out for us,” says Acquaviva, who helped develop an LGBTQ-inclusive curriculum for The Conversation Project, an organization that helps people discuss their end-of-life plans. “We have to figure out ways to look out for ourselves.”

Charles Koehler, in a blue polo shirt, stands next to his son Spencer, age 28, wearing a red T-shirt. Both men are smiling, and standing outdoors with trees and foliage visible in the background.
Charles with son Spencer, age 28.

Because Hostetler had an amalgamation of chosen and genetic family members, he wanted to make sure everyone was on the same page. He organized his will and called his daughters, his ex-wife, the sons, and their mothers. Hostetler was adamant that he wanted to die at home, so he arranged for hospice care. Instead of hiding his identity, Hostetler informed his health care providers that he was gay and that Koehler was his life partner and caregiver. Koehler says that without exception, every single person was supportive and respectful of their relationship.

In the final two weeks of Hostetler’s life, a hospice nurse suggested setting up his bed in the living room so he wouldn’t be alone. His eldest daughter and her family moved in and traded shifts with Koehler and a hospice nurse. His nurses provided massage and music therapy to make him more comfortable. Hostetler was sedated, hovering at the edge of their everyday routines. Finally, on New Year’s Eve 2010, his daughters and his life partner surrounded his bed and held hands as he took his last breaths. Koehler checked his pulse and said, “I think he’s gone.” Koehler describes the whole experience as peaceful. Having months to accept that Hostetler would die helped make the process less traumatizing for everyone.

Three framed photographs sit on a wooden shelf. The photos show, from left: Charles, age 45 (left) with Dennis, age 55 (right) holding their sons Connor, age 2 (left) and Spencer, age 4 (right) on Christmas 1997, in front of a decorated Christmas tree. Center: Charles, age 45, with Dennis, age 55; both wearing patterned sweaters and smiling broadly. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, smiles while holding her two children; one an infant, and one a toddler with their arms around their sibling.
Left: Charles (left), age 45, with Dennis (right), age 55, holding their sons Connor (left), age 2, and Spencer (right), age 4, on Christmas 1997. Center: Charles, age 45, with Dennis, age 55. Right: Jocelyn, Dennis’ daughter from a previous 12-year marriage, with her children.

“In a strange way it was both sad and yet somehow comforting at the same time knowing that he died being surrounded by us at his home, just as he wished,” Koehler says. But not all LGBTQ patients receive such affirming care: A 2020 survey published in the Journal of Palliative Medicine found that nearly one-quarter of health care providers witnessed discrimination against LGBTQ patients in palliative care settings and nearly 30% of the respondents reported witnessing discrimination against LGBTQ spouses, partners, or people whom the patient had legally designated to make care decisions for them.

Preparing for the Inevitable End

Experts like Acquaviva and Wayland say that health providers need to take time to understand the barriers that create health inequities in the LGBTQ community and undergo cultural competency training to avoid making the same mistakes. Because LGBTQ families are more likely to be families of choice, providers need to be sensitive to those dynamics and spend time learning who is part of a patient’s support system instead of automatically deferring to genetic family members. There are also simple ways to acknowledge the range of human gender and sexual identities, such as including nongendered pronouns on forms, asking for patients’ pronouns and using them correctly, and including LGBTQ-affirming language in nondiscrimination clauses.

Those steps may seem like small gestures, but they’re important signals. If an organization doesn’t commit to doing something as minimal as adding inclusive language to a statement, says Acquaviva, then it’s reasonable to expect that they won’t treat a patient with the dignity they deserve. Acquaviva has both written about and experienced this discrimination: She and her wife talked extensively about their plans when her wife was diagnosed with ovarian cancer in 2019 and ultimately decided to use hospice care to help her die comfortably. But then they discovered that none of the hospice services near their Virginia home included LGBTQ-affirming language in their nondiscrimination statements. Despite the fact that both women were experts in end-of-life care, they faced death without the support of hospice because they felt they wouldn’t receive respectful care. Acquaviva was the one managing her wife’s pain meds, bathing her, and making sure she didn’t get bed sores.

Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri. He wears a red, white, and blue-checked shirt, glasses, and holds up a pint of beer to toast with a friend who is off-camera.
Charles shares drinks with members of his local PrimeTimers social group, of which he was founding president, on the back patio of Just John Night Club in St. Louis, Missouri.

There’s no single definition of a good death. Not everyone knows when their death is coming and not every death can follow a specific plan, but every death can be expected and discussed ahead of time. “We all want to imagine we’re gonna live a really long time, and it’s human nature to imagine that everything’s gonna be OK, but the reality is 100% of us are going to die,” Acquaviva says. Have the conversation—even if it’s awkward, uncomfortable, and hard. 

Now, more than a decade later, Koehler remains an active retiree. He’s single but he isn’t alone. He’s the vice president of PrimeTimers Worldwide, a large social group for older gay, bisexual, and transgender men. On Sundays he catches up with Hostetler’s daughters and their mom over Zoom, and when the younger daughter needed surgery, he helped with child care. “Having grandkids is something that I never dreamed of as even a remote possibility,” he says. “It never even crossed my mind at all.” His documents are in order and he encourages his peers to make end-of-life plans. But while he’s still here, he’s keeping busy, tending to the life and family he and Hostetler built together.

Complete Article HERE!

A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.

The anxieties of growing old when you’re LGBTQ

Who would you call to bring you chicken soup? For many LGBTQ seniors who are alone, that’s no easy question.

A person holds an umbrella in the rainbow flag colors in the annual Gay Pride Parade, part of the Durban Pride Festival, on June 29, 2019, in Durban, South Africa.

By Steven Petrow

Who would bring you chicken soup if you were sick? For most people of a certain age, that’s easy — a spouse or an adult child would step up.

For many LGBTQ people, however, it’s not a simple question at all.

“Many [would] have to think really hard about this,” said Imani Woody, an academic and community advocate who retired from AARP to start an organization serving LGBTQ seniors. She said chicken soup is a stand-in for having a social support system, which many of us need.

“Build your village right now,” Woody said.

A few years ago, I would have said that my then-husband would be my primary caregiver if I became ill or disabled. I’d have done the same for him. Now I’m 65 and divorced, and this issue — who can I call on? — is top of mind for me.

It’s also a serious concern for many LGBTQ people I know, whether single or partnered. Take one friend of mine, for example, who is 60 and a single gay man. He took care of his dying father last year (as I’d done four years earlier with my parents). During his dad’s lengthy illness, we talked about two questions that terrify us (and I don’t use that word lightly): “Who will take care of us when we need help?” “Where will we go when we can no longer take care of ourselves?”

Of course, aging is an equal opportunity challenge for straight and queer people alike. But in interviews with more than four dozen LGBTQ people, singled and partnered, I heard repeatedly about the anxieties faced by queer elders.

SAGE/Advocacy & Services for LGBT Elders, the National Resource Center on LGBTQ+ Aging, and Healthypeople.gov document the health challenges LGBTQ people face. We’re twice as likely as our straight counterparts to be single and live alone, which means more likely to be isolated and lonely. We’re four times less likely to have children. We’re more likely to face poverty and homelessness, and to have poor physical and mental health. Many of us report delaying or avoiding necessary medical care because we face discrimination or mistreatment by health-care providers. If you’re queer and trans or a person of color, these disparities are heightened further. (There are about 3 million LGBTQ people 50 and older.)

“It’s a very serious challenge for many LGBTQ older people,” said Michael Adams, chief executive of SAGE. “The harsh reality is that there just aren’t as many opportunities for older LGBTQ folks when it comes to creating, building and maintaining social connections. … We’re lacking the personal connections that often come with traditional family structures.”

In part, that’s because LGBTQ people have often found themselves rejected by family, friends and community in their younger years because of their sexual orientation or gender identity. To boot, we could not legally marry until 2015, when the Supreme Court ruled in favor of marriage equality. But even married queer folks can end up alone after a divorce or death, which often brings different challenges than those faced by straight people facing the same life-changing events.

An 80-year-old lesbian put it to me this way: For straight people, “If you were to go into a nursing home, you would not have to worry that people taking care of you did not approve of your orientation, or that the facility would not take you because they were a ‘religious’ community. These are real issues for the queer community.”

Another friend tells me he has no plans for the future except a guest room and a second bathroom. And another said he hopes by the time he needs care, there will be an LGBTQ senior community in his city. “Otherwise, I have nothing,” he said.

A former colleague of mine, a lesbian, told me she worries about the cost of senior living: “I dread it all. I won’t have any dough then, so it’s really up to fate.”

Senior living communities, which provide support for the aging, can be less than welcoming to those who are LGBTQ. Staff, some of whom have traditional views on sexuality, gender identity and marriage, also pose challenges to LGBTQ elders since many facilities lack the training and policies to discourage discrimination, which can lead to harassment, Adams said.

Patrick Mizelle, who lived in Georgia with his husband, told Kaiser Health News several years ago that he worried about how “churchy” or faith-based their local options seemed, and feared they would not be accepted as a couple. “Have I come this far only to go back in the closet and pretend we are brothers?” he asked.

Rather than take that risk, they moved across the country to a queer-friendly senior living complex in Portland, Ore. They are among the lucky ones in that they could afford both the move and the cost of this domestic situation.

How do you find a welcoming LGBTQ senior living arrangement? SAGE publishes a comprehensive list of long-term care facilities (organized by state and city, along with level of care) that it has found to be welcoming.

“We also have resources about the kinds of questions that a consumer can ask to figure out if a provider is paying attention to the steps that need to be taken to become more welcoming to LGBTQ older adults,” Adams said.

SAGE also offers training to staff members at facilities that provide elder care, and has partnered with the Human Rights Campaign, the national LGBTQ lobbying and advocacy organization, in launching the Long-Term Care Equality Index, which sets out best practices to help make these facilities welcoming to the LGBTQ community. More than 75 facilities have made pledges to abide by these best practices. AARP also provides a list of affordable LGBTQ-welcoming senior housing.

What else can LGBTQ people do to find connection, to find a tribe? Many suggest the importance of developing intergenerational friendships early on in life, even as early as your 30s and 40s. Elders can impart wisdom and experience to younger LGBTQ people, who can provide help in return; as decades pass, the young ones become the elders.

Recently, the Modern Elder Academy, which refers to itself as a “midlife wisdom school,” and the founders of Death Over Dinner, launched a program called “Generations Over Dinner” expressly to connect people of all ages.

The Harvard Study of Adult Development, which began tracking more than 238 men (regardless of sexual orientation) in 1938 and continues to this day, has reported consistently that relationships are the critical ingredient in well-being, particularly as we age.

Put simply, the more connected we are, the more likely we are to be healthy and happy. To paraphrase Imani Woody: Start building those bridges.

Complete Article HERE!

After a Dementia Diagnosis

— Preparing for the Future

A diagnosis of dementia, a category of diseases affecting memory and thinking that includes Alzheimer’s disease, can feel overwhelming and upsetting. You might worry that you will lose control over your life and ability to make your own decisions. Fortunately, receiving a diagnosis of dementia or Alzheimer’s does not mean that you cannot execute legal documents or make decisions about plans for your future finances and health care.

People with dementia can execute legal documents to plan for their futures when they have the mental state — or capacity — to do so. Capacity refers to your ability to understand the contents of a legal document, such as a will, and know the consequences of executing it. If you know who your family is, understand your assets, and comprehend your will, you can execute a valid will and plan for the distribution of your estate after your death, provided you understand what you are signing and its effect on your life.

The following can help you in planning where you wish to live, what kind of care you receive, and what happens to your assets if you get severely ill or pass away.

Health Care Power of Attorney

Consider appointing a health care agent to make medical decisions if you become incapacitated. You can name a health care agent using a health care power of attorney, sometimes called a medical power of attorney or a durable power of attorney for health care. Your health care agent can make medical choices if you can no longer do so.

Picking someone you trust, such as a responsible child or spouse, or another family member, can give you peace of mind that they will have your best interests and desires in mind when they make decisions. For instance, dementia patients who prefer receiving in-home care can express this wish to their agent.

In the power of attorney document, you can also state your intentions regarding health care and limit your agent’s capabilities if you wish.

Living Will

For an added layer of protection, you can also draft an advance directive or living will that states your desires regarding medical treatment if you are unable to communicate with your physician. Your living will can express whether you want treatment to prolong your life.

Financial Power of Attorney

Using a financial power of attorney, known as a power of attorney for property, you can select a trusted individual to handle your financial affairs if your disease progresses such that you can no longer make financial decisions. Your financial agent can manage your money and pay bills on your behalf, but they cannot use your money for themselves.

In the power of attorney for property document, you can restrict your agent’s powers. For instance, a person might specify that the agent can manage personal accounts, but not sell the family home.

Long-Term Care Planning

After a dementia diagnosis, consider whether you would like to receive long-term care at home or in a facility, and whether you intend to apply for Medicaid or long-term care insurance. If you want to apply for Medicaid, you might need to prepare your finances to become eligible.

Last Will and Testament

Making a last will and testament, also known as a will, can help ensure your assets go to your family and friends when you pass away. You can determine how much of your money each beneficiary will receive and make bequests to individuals. For example, if you have items of sentimental value, you can leave them to specific people. Without a will, your assets will transfer to your heirs according to the law in your state.

Consider meeting with an elder law attorney in your area to discuss your plans for your future.

For additional support and to learn more about Alzheimer’s disease and related disorders, reach out to your local Alzheimer’s Association chapter.

Complete Article HERE!

Choosing hospice care for seniors

By SeniorsMatter Staff

At a certain point, the emphasis shifts from keeping terminally ill seniors alive to keeping them as comfortable as possible. Saying goodbye to our loved ones can seem unbearable. But the silver lining is that your senior doesn’t have to suffer unnecessarily. Instead of continuing painful and tiresome treatments until their last moments, a senior’s care plan can change to focus on quality of life. Hospice services are often the best senior care option when a serious illness becomes terminal. A hospice provider will focus on compassionate, dignified end-of-life care.

If you’d like to learn more about options for hospice care in your area, our Resource Hub can help you easily track down senior care services in your neighborhood. This free online resource contains detailed listings of local hospice services, allowing you to assess and choose the best options for your senior.

In this article, we’ll explore everything you need to know about hospice care. This type of care is a common choice for those facing a terminal illness, and the National Hospice and Palliative Care Organization reports that more than 50% of Medicare recipients were enrolled with a hospice provider at the time of their death.

In 2014, the Huffington Post reported that the hospice industry in the United States had quadrupled in size since the turn of the century—to the point where 65% of all Americans spend the last stage of their life in hospice services. But how do you know if this type of care is right for your senior?

Hospice care: allowing your senior to die with comfort and dignity

What is hospice care?

The goal of hospice care is not to cure your senior or extend their lifespan. Instead, hospice care professionals strive to make the last few months of your senior’s life as peaceful and as comfortable as possible by addressing pain and other problematic symptoms in the best way possible.

The end result is a dignified death that allows seniors to spend more time creating valuable memories with family members instead of preoccupying themselves with futile medical care.

Hospice care is only for seniors with terminal diagnoses. If there’s still a reasonable hope for a full recovery, hospice services are not recommended. Some seniors take it upon themselves to choose a hospice care plan when faced with months of grueling surgeries, chemotherapy and overnight hospital stays. They’re perfectly within their rights to refuse medical treatment as long as they are of sound body and mind.

If your senior has become incapacitated for whatever reason (either physically or mentally), family caregivers may choose a hospice care provider on their behalf.

Hospice care involves a number of services, including:

  • Medical social services
  • Occupational therapy
  • Physical therapy
  • Speech therapy
  • Caregiver support
  • Grief support
  • Medical equipment
  • Physician services
  • Pain medication
  • Nursing services
  • Counseling
  • Spiritual support
  • Emotional support

When should my senior start hospice care?

If you start hospice care too early, your senior may miss opportunities for potentially lifesaving treatment. On the other hand, starting hospice care too late can reduce the positive impacts this type of care can have on quality of life.

According to a report released by the National Hospice and Palliative Care Organization (NHPCO) in 2019, the average time Medicare patients spent in hospice during 2018 was about 90 days. However, about 28% of beneficiaries spent seven days or less in hospice care—which the NHPCO considers far too short to be beneficial. 

Generally, hospice care is provided when a senior has less than six months to live.

Is hospice care the same thing as palliative care?

Both hospice care and palliative care are types of “end-of-life” care options for seniors. However, they’re not the same. Palliative care is provided while a senior continues to receive medical care for a terminal condition, while hospice care essentially abandons any potential cure or treatment and focuses entirely on comfort.

Why would my senior need hospice care?

In order for a senior to be eligible for hospice care, they must have received a terminal diagnosis. Seniors may benefit from a hospice care plan if they feel like they can no longer face further painful and uncomfortable medical procedures. Many seniors accept the reality of their situation and choose to die on their own terms instead of fighting for a highly unlikely recovery.

What are some signs my senior should seek hospice care?

There are a number of signs that could suggest it’s time to consider hospice care:

  • Treatment is no longer having any effect.
  • Your senior no longer wishes to receive aggressive intervention.
  • The side effects of their medical treatments are becoming difficult to manage.
  • They seem confused or drained by constant medical treatments.
  • They are losing the ability to communicate effectively.
  • They are losing their appetite.
  • They spend much of their time sedated or sleeping.
  • Medical professionals indicate that continued treatments will provide no benefit.
  • Your senior expresses a desire to die on their own terms.

Questions to ask yourself as you consider hospice care

  • Is my senior suffering from a life-limiting disease or illness?
  • Is my senior suffering serious signs of decline?
  • Shouldn’t my senior die on their own terms?

What services does hospice care provide?

Limiting pain and increasing comfort

Seniors who receive hospice care can limit pain with a number of options, and their pain can be controlled without frequent trips to the hospital. Whether your senior is aging in place or living in a nursing home, hospice care can make their days as comfortable as possible. For example, medical appliances and supplies can be brought to their residences (such as hospital beds and wheelchairs).

Certain therapeutic treatments can also provide relief to seniors, including physical and occupational therapy. Note that this therapy is not intended to “cure” your senior; it’s only intended to make their life more comfortable. Hospice care features a strong emphasis on holistic well-being, and it may include home health care, nursing services, medication and even respite care for family caregivers. These services are often available around the clock.

According to the National Hospice and Palliative Care Organization, 65% of seniors who entered hospice care experienced a drastic reduction of pain within just 48 hours.

Emotional support

Seniors can also receive emotional support from trained professionals when they choose hospice care. Confronting our mortality is never easy, and a range of mental health care experts, social workers, counselors and other skilled individuals can help seniors find peace and well-being as they approach the end of their life.

Spiritual support

Seniors who choose hospice care may find themselves seeking spiritual guidance. Religious leaders can visit your senior as part of their hospice experience, helping seniors navigate the process of death and consider the afterlife. Some religions suggest followers go through certain steps before they leave the world.

Limiting medical procedures

Another important aspect of hospice care is limiting medical care. If your senior chooses hospice care, they can stop undergoing difficult treatments, such as chemotherapy or dialysis. However, they may still continue with other types of treatments, such as medication for low blood pressure.

Questions about hospice care

What types of options are available with hospice care?

Hospice care can be divided into the following main categories:

  • Nursing home hospice care
  • In-home hospice care
  • Hospice care facilities

Nursing home hospice care is an excellent choice for seniors who need to remain in long-term care facilities, while home care can be delivered to those who are aging in place. Although your senior may also attend dedicated hospice care facilities, excessive transportation is not recommended for those with terminal illnesses. For this reason, the first two choices are most common.

Is hospice care safe?

Hospice services are an established part of the medical industry in the United States, and it’s completely safe when carried out by qualified, experienced professionals. Hospice care is often misinterpreted as “helping someone to die,” but medical treatment still continues until the moment of death.

Is hospice care available for Alzheimer’s disease and other forms of dementia?

Hospice care can be catered to the needs of seniors with Alzheimer’s or dementia. Along with the aforementioned services, dementia-specific hospice care options include:

  • Mental health care support specifically geared toward dementia
  • Feeding
  • Respite care for overwhelmed family caregivers

What questions should I ask hospice care providers?

  • What will my senior’s hospice care cost?
  • Does my senior meet the criteria for hospice care?
  • How long will my senior survive on hospice care?
  • What kind of workers/medical professionals will be assisting my senior?
  • Are counselors and social workers included in hospice care?
  • How often will nurses and other medical professionals come to help my senior?
  • How will you manage my senior’s pain?
  • What is the role of a hospice doctor?
  • What happens if my senior’s condition improves?
  • What happens if I decide to halt hospice care?

How to talk to family members about hospice care

Broaching the topic of hospice care can be uncomfortable. It’s important to approach this topic in a careful, considerate manner.

Hospice care is a topic you should also discuss with the entire family. Some family members may want your senior to continue fighting until the bitter end and may not want to accept that the battle is already lost. When you discuss this type of care, try to bring the entire family together and give each person a chance to speak.

How to approach the topic of hospice care with your senior

Seniors may not want to confront the possibility of their own mortality, and the conversation may become extremely emotional.

On the other hand, many seniors achieve a sense of calm and focus when they accept their fate, and they may be glad that you brought up the possibility of hospice services. Indeed, they may be thankful that you’re giving them the option to end life on their own terms and cease painful treatments.

Questions to help a senior consider hospice care

  • You’ve been fighting your illness for so long. Wouldn’t you like to be more comfortable now?
  • Wouldn’t you like to go out on your own terms?
  • You’ve been spending so much time in the hospital. Wouldn’t you like to spend more time with your family members before you leave us?

Paying for hospice care

How much does hospice care cost?

The cost of hospice care depends on the services and treatments your senior requires. Some seniors require only pain control and emotional support, while others might require more extensive care options like rehab, medical equipment and more. It’s worth noting that hospice care will probably be cheaper than continuing additional medical treatments that will not cure your senior.

Can I get help paying for hospice care?

The good news is you can get help paying for hospice care from a number of potential sources:

  • Medicare: Medicare can provide funding for hospice care under certain circumstances. Medicare’s hospice benefit applies if your doctor certifies your senior has a life expectancy of six months or less. Once your hospice benefit begins, Medicare will not cover anything intended to cure the terminal illness but will cover all hospice care costs.
  • Medicaid: The Medicaid hospice benefit provides nursing, physician services, counseling and more to those with a terminal diagnosis. Coverage includes home care, short-term inpatient care, respite care, equipment and more. Patients must file their election statement with a chosen hospice provider to be eligible.
  • Veterans Benefits: Veterans Benefits provides VA Palliative Care for enrolled veterans. Coverage includes the cost of a health care team, which not only includes medical professionals but also mental health workers and chaplains.
  • Private insurance: In some cases, private insurance plans will cover hospice care. However, it really depends on your specific plan, and you’ll need to read the fine print to be sure.

How can I find hospice care near me?

If you’ve been searching for hospice care near you, it’s easier than ever to locate qualified, reputable care options. Refer to our Resource Hub for detailed listings of hospice care providers in your neighborhood. It’s as easy as visiting this free online resource, browsing your options, and choosing the best hospice care provider nearby.

Complete Article HERE!

End-of-life care considerations for LGBTQ older adults with Carey Candrian, PhD

AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.

0:00 AMA Moving Medicine for June 21, 2022
1:04 What disparities affect LGBTQ older adults, specifically?
2:04 What is driving these disparities in LGBTQ older adults?
4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health?
5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care?
8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps?
8:43 What are the drivers of this discrimination?
9:53 What kind of data would be helpful—and how can it best be collected by care providers?
11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults?
13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?