Category: Disability

Posted on

Having Essential Conversations About Death

— If your wishes remain unspoken, you will leave your loved ones in a quagmire of confusion

“So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself.”

By Jill Smolowe

Since our first encounter on a cyber dating site in 2010, my husband and I have had a fluid conversation about death. That includes what we expect from the other should we find ourself hospitalized. Or facing a debilitating condition. Or trapped in a twilight between life and death. In other words, we discuss what we’re willing to endure. And what we are not.

Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

If that sounds odd or creepy, it may help to know that Bob and I met after each of us lost beloved spouses and longstanding marriages to cancer. From the get-go, caregiving, illness and death were front and center in our lives. Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

In 2023, our conversation intensified as we experienced two more losses. I appreciated that I could tell Bob that I was relieved that my older brother went quickly after a massive stroke last January that his doctors said would leave Alan’s physical and mental capacities severely impaired. I didn’t want to lose my brother. But even more, I didn’t want Alan to have to slog through years of a life that he would not have wanted.

Death and Illness Part of Our Lives

I knew this because Alan and I had discussed end-of-life wishes many times over the decades. He frequently quoted my parents, who liked to say, “Life is a day in the classroom.” Alan had lived, Alan had learned. After the stroke, I had no doubt that Alan wanted the bell to ring signaling class was over.

Far harder was the seven-month approach to death that my stepson endured before he closed his eyes for the last time in June. Just 41, Adam was determined to try anything and everything to overcome pancreatic cancer. It was upsetting to watch 150 pounds drop off his body because he couldn’t eat. It was horrifying to watch Adam become confined to bed because the cancer deprived him of the use of his legs. It was devastating to watch Adam shift from an autonomous adult to one fully dependent on others.

But all of that paled beside the physical pain Adam endured minute after minute, day after day, month after month. Neither opioids nor fentanyl could quiet his writhing agony. And there wasn’t a damn thing Bob or I could do to ease his pain.

But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost.

At night after Adam would go to bed, groaning up the stairs of our condo to lie awake moaning all night, Bob and I would say to each other, “I don’t know how he puts up with this.” We were clear that the literally gut-wrenching treatments were Adam’s choice, and a choice we would honor. We were clear that he was decades younger than either of us and had good reason to fight. But as we made clear to each other night after night, this was a choice neither Bob, at 74, nor I, at 68, would make.

After delving into the requirements surrounding the Medical Aid in Dying measure in our home state of New Jersey, Bob and I told each other that were we in Adam’s situation, we would want out. Where Adam refused to let the words “palliative care” and “hospice” into his hospital room until his very last days, we told each other that we regarded both as blessings, not curse words.

Bob and I do not share a belief about what comes next. But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost. So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself. Both us know that there are situations where we would regard death as the kinder option.

Because we have had front row seats to so much death and dying, we also know that people’s death wishes shift with circumstance. There can be little clarity if end-of-life wishes are shoved aside for a last-minute chat. Instead, we believe that death considerations need to be part of an ongoing discussion — one that needs to be shared not only between us, but with our children, as well.

Sometimes I forget that other people do not share our comfort level with such talk. A few weeks ago, Bob and I dined with a couple, good friends both, who between them have four parents in their nineties. After they laid out the difficult health issues and hard choices they were confronting, I asked if their parents wanted to continue living.

Talking About Death

Their expressions registered surprise at the question. Their answers conveyed more speculation than certainty. Neither seemed to know even if their parents feared or welcomed death at this advanced stage in their lives. Breezily (okay, too breezily), I shared some thoughts about dying, and then we parted.

Nine days later, I got a text from the wife, asking if she could stop by. Waving off my offer of coffee, she got right down to business. “You said some things the other night that scared me,” she said. “I’m worried about you.”

As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents.

I blinked, trying to recall our dinner conversation. “Oh,” I said, “you mean the stuff about death?”

She nodded, her expression grim.

“I’m not suicidal, if that’s what you’re thinking,” I said.

Her expression relaxed a notch.

I reminded my friend that Bob and I had met because we’d each lost our spouses. I assured her that death was a natural part of our discussion. I reminded her that I’m a grief coach. That death comes up a lot in those conversations, too. Then, I apologized — sincerely — for having scared her. “You’re a good friend,” I said.

I felt deeply touched that my friend had cared enough to reach out to me. It’s not easy to open a conversation with someone you fear may be wrestling with mental health issues. To broach the subject had been not only caring, but brave.

After I laid her concerns to rest, our conversation segued into my friend’s feelings of helplessness and confusion about her parents’ care. As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents. As a result, she was struggling to figure out what she thought was best for her parents— while not knowing what they thought was best for themselves.

“Have you considered looking into palliative care?” I asked.

“What’s that?” she replied.

Stunned by her response, my feeling of contrition evaporated in a gust of gratitude. Gratitude that Bob and I are able to discuss these difficult issues, not only between ourselves, but with our children. Gratitude that we know and understand each other’s wishes. Gratitude that we will not leave our children to have to make difficult choices we were unable or unwilling to make for ourselves.

Complete Article ↪HERE↩!

Posted on

‘I have my life in my own hands’

— A filmmaker spent three years with Paralympian and triathlete Marieke Vervoort to explore her wish to die by euthanasia

By Amy Woodyatt

Throughout her storied career, triathlete and Paralympian Marieke Vervoort captured the imagination of her native Belgium and the wider world.

But it wasn’t just her stack of sporting achievements that drew attention.

Vervoort lived with a degenerative spinal and muscle condition and had long been vocal about how one day she wanted to – and would – end her life by euthanasia.

Euthanasia involves a physician administering a drug to end the life of a patient who is suffering, usually with a debilitating or life-limiting condition.

“Everyone is pushing me and asking me, ‘When are you going to die? Do you know already the date that you’re going to die?’” she told documentary maker Pola Rapaport, who last year directed the film “Addicted to Life” about Vervoort.

“I said, ‘F**k you.’ … You don’t know when you want to die. When the time comes, when I feel it’s enough, then I will decide.”

She was a Paralympic gold medalist at London 2012, winner of silver medals at Rio and holder of a European record for the T52 100 meters, but Vervoort’s condition caused her near-constant pain and made sleeping very difficult.

She received euthanasia approval in her native Belgium in 2008, but far from signaling the end of her life, Vervoort was very vocal about how the ability to control her own destiny empowered her to continue to compete at the highest level and make the most of her remaining days.

Documentary maker Rapaport, who encountered Vervoort’s story after reading a news report about her, says she was instantly captivated by the athlete and how the “paradoxical” permission to die “had given her a kind of liberation of spirit.”

“Her knowing that she could choose her date of dying and the conditions under which she would die, and whom she would have with her. … The fact that that had given her so much mental liberation and spiritual liberation, I thought, was a fantastic story,” Rapaport told CNN Sport.

Vervoort had been living with her illness, which caused paraplegia, since her teens, and as she got older, she became involved in wheelchair basketball, swimming and triathlons. By the time she applied for euthanasia, she had already considered and planned to die by suicide.

“I no longer have a fear of death,” she explained. “I see it as an operation, where you go to sleep and never wake up. For me, it’s something peaceful. I don’t want to suffer when I’m dying … When it becomes too much for me to handle then I have my life in my own hands.”

Rapaport added: “She told us on day one, ‘The time is not here for me to call my doctor and tell him that I want to go now. But when the bad days outweigh the good days, that’s when I will do it.’”

Ultimately, that moment ended up coming over a decade after she was granted the approval for the procedure.

A love for life

Vervoort won gold in the T52 100m wheelchair race and silver in the 200m race at the London 2012 Paralympics, then claimed two further medals at Rio 2016.

Apart from her athletic endeavors and achievements, Vervoort made sure to live to the fullest toward the end of her life, making time for wheelchair bungee jumps, Lamborghini racing with driver Niels Lagrange, trips abroad and time with her close friends.

Vervoort’s continued enthusiasm for living in spite of her suffering was the result of being granted the choice to do what she wanted with her life, Rapaport said.

“The most important central theme of the film is that when a person has control over their personal body, mind, spirit, that it gives them freedom to live. And in this case, having control over decision-making about the end of your life,” Rapaport explained.

“She had incredible highs and really amazing successes that still astonish me and I think astonished her fans and the Belgian public and the royal family. And she also had horrendous lows,” Rapaport said.

Vervoort was named a Grand Officer of the Order of the Crown by Belgium’s King Philippe, whom she met in a ceremony in 2013, along with Queen Mathilde.

By the end of her life, seizures and excruciating pain had become almost daily for Vervoort, which also understandably contributed to a decline in her athletic ability.

The day Rapaport and her husband, Wolfgang Held, who is also a filmmaker, met Vervoort, the athlete experienced a seizure, which at the time led them to believe she was dying in front of them.

“It was grueling to watch. It was very upsetting to watch when Marieke would go into the seizures, and over the three years that we shot with her on and off, it happened more and more frequently,” Rapaport added.

“I didn’t want it to be a film only about this marvelous Paralympic athlete who triumphs in the face of incredible odds. I really wanted the audience to get the sense of what this young woman goes through on a regular basis,” she explained.

An ongoing conversation

In 2019, after a small party with friends and family, Vervoort died through euthanasia at her home in Diest, Belgium, at the age of 40 – and although it has now been some four years since her passing, conversations around euthanasia are still as relevant now as they were then.

Although a few European countries including Belgium, Luxembourg, the Netherlands and, recently, Portugal allow euthanasia under certain conditions, euthanasia and assisted suicide are not legal in most countries, and assisting a suicide, or providing a means to die by suicide, is punishable with jail time in many places.

The Vatican condemned euthanasia in its strongest language yet in 2020, calling it an “act of homicide” that can never be justified.

Meanwhile, debates resurface in Belgium over patients who have died by euthanasia on the grounds of psychiatric reasons.

Last year, the European Court of Human Rights ruled that Belgium didn’t violate the rights of a person with depression when it accepted her decision to go ahead with a euthanasia procedure after her son, with support from Christian advocacy organization ADF International, mounted a court case that was highly publicized in the country.

In Belgium, 2,966 people died by euthanasia in 2022, comprising 2.5% of all deaths in the country that year, according to the country’s Federal Commission for the Control and Evaluation of Euthanasia.

Of euthanasia performed in 2022, nearly 90% of patients were over the age of 60, with almost 60% of the 2,966 who died having cancer, about 20% affected by multiple diseases and about 9% affected by nervous system diseases.

Rapaport told CNN Sport she wanted Vervoort’s experience – shown through shots of the athlete grimacing and crying out in pain, as well as footage of her seizures – to help people to understand why people would decide to die by euthanasia.

“It’s not an advocacy film. It doesn’t have any statistics. There’s no politicking in it. I felt that the more you can enter into this young woman’s experience, the more you will understand the arguments for assisted dying, no matter what country you’re in,” Rapaport added.

“Her story does expand the conversation, and you see what a person goes through and her case: how [the right to die as she wanted] improved her life immeasurably.

“That’s what I thought was so beautiful about her story, that this permission made her life so much better in the meantime, and it really allowed her to live to the maximum. And that was just unbelievably inspiring,” she added.

Rapaport hopes the film will keep conversations around death ongoing.

“It’s something generally people don’t want to talk about until they absolutely have to; even then, they don’t want to talk about it. But having control over that really can transform the rest of a person’s life and that is all we have.

“That’s all we have because we’re all going there,” Rapaport added. “It’s just a matter of when, how and how it will be handled.”

Posted on

Death by Poverty

— Canada’s Assisted Dying Program Exposes Fault Lines in Healthcare

Changes to Canada’s assisted dying program have garnered international controversy. New amendments extend access to assisted death to those with non-fatal conditions. These changes have resulted in dozens of patients applying to escape not illness, but poverty.

By Matthew Walters

Canada’s assisted dying program, known as MAiD (Medical Assistance in Dying), has become an object of international attention in the past few months. Last fall, dozens of stories came out about patients who applied for MAiD not because of sickness, but because of poverty. Disability activists have warned for years about the dangers of making death accessible while social services remain inaccessible. They were largely ignored. But now, this criticism is finding an echo among healthcare professionals and activists, as well as within the broader population.

The MAiD program was enacted in 2016 when the Supreme Court of Canada ruled that it was unconstitutional to deny assisted suicide to persons with a foreseeable cause of death. This measure was welcomed by a large majority of Canadians, who saw it as giving greater autonomy to people facing the end of life and allowing for a compassionate option. But in 2021, the bill was controversially amended to drop several safeguards on access to MAiD, allowing for those whose deaths are “not naturally foreseeable,” qualifying everyone with “a serious illness, disease, or disability” to access MAiD with a separate set of requirements.

Canada’s image in the U.S., particularly among liberals, is of a country that is like America but with something like a welfare state. Unfortunately, this image is sharply divorced from the reality: social reforms earned in the past have been clawed back and gutted through decades of economic crisis combined with austerity, privatizations, and counter-reforms from neoliberal governments. Canada ranks lower on spending and service than most OECD countries and scores even lower than the U.S. on social spending. This austerity inevitably impacts the marginalized the most, One of the groups most victimized by austerity and privatization has been the disabled population.

Conditions for the disabled population in Canada are nightmarish: over 40 percent of disabled people live below the poverty line, and there is no province in Canada where disability pays above it. In the most populous province of the country, Ontario, disability is $1,228 CAD per month, while rent in Toronto averages at $2,500 CAD per month. Disabled people are also overwhelmingly represented in unemployment statistics, with 36 percent of those with a “long term condition or disability” reporting unemployment in the immediate aftermath of the pandemic. Disabled people were even cruelly denied from accessing the CERB program, which paid $2,000 a month — nearly twice what disabled people earn on assistance programs. As author Nora Loreto wrote:

Over the course of the pandemic, expanded MAiD was the most significant change in federal healthcare policy. There have been no permanent significant social supports established for disabled people, guaranteed income projects, financial supports or rent controls, or creation of new financing programs for assistive devices. Instead, the government has said: We will make it easier for you to choose to die, but we won’t give you what you need to have a fulfilling life.

Many stories have come out about people seeking MAiD who would have continued living if not for the circumstances poverty had created in their lives. A woman in Winnipeg received assisted suicide because, as her conditioned worsened, she could not afford the increasing costs of at-home care and the public system was no longer able to support her needs. She wrote to her loved ones in her obituary, “Ultimately it was not a genetic disease that took me out, it was a system.” Two women in Ontario, both with Multiple Chemical Sensitivities (MCS), a condition in which one or several common chemicals create a severe, debilitating reaction, applied for MAiD after both fighting and failing to find accessible housing. One woman, Denise, said to the media that she applied to MAiD “because of abject poverty” while living on disability payments as well as her inability to gain accessible housing after seven years of applying. The other woman, Sophia, said in a video eight days before receiving MAiD that “the government sees me as expendable trash, a complainer, useless and a pain in the ass” after two years of attempting to access smoke- and chemical-free housing.

MCS as a condition is largely manageable; both women said that when they were not exposed to the triggering chemicals in their daily lives, they could function and live happy, healthy lives. They also would likely not have applied to MAiD if not for poverty and lack of access to the support systems they need. Rather than increasing the freedom and dignity of patients, MAiD has exposed the deep fault lines within Canadian social infrastructure. The system in place for these vulnerable patients is so inaccessible and underfunded that death becomes the preferable — and easier — choice. Effectively, MAiD has replaced access to public systems for the most “burdensome” patients. Critics say that the ambiguity and permissiveness of MAiD laws are encouraging this situation. Trudo Lemmens, a professor of health law and policy at the University of Toronto, argues that Canada’s laws have become the “most permissive in the world:”

In the context of medical assistance in dying, we’re getting rid of this idea that we will first try the least interventionist measures. There is no jurisdiction in the world other than Canada that frames this as just a medical intervention.

This framework has led to several disturbing cases, such as Roger Foley, a man with Degenerative Brain Disorder who was hospitalized in London, Ontario. He became so alarmed at how frequently he was being asked about euthanasia, he began recording the conversations. In one of these conversations, the hospital’s director of ethics mentioned while “discussing” MAiD with him that continuing his care to live would cost the hospital “north of $1,500 a day.” Defenders of MAiD will defend that the lack of regulations give autonomy to patients when, in reality, they only offer the choice of death while accepting that the choice to live is denied. As Lemmens stated in the same interview, “We’re basically sending the message that persons with disabilities who are not dying have an understandable reason to end their life. And this is discriminatory.”

In a concession to rapidly growing pressure from psychiatric and medical experts, the Canadian federal government delayed the expansion of MAiD to include those suffering from psychiatric illnesses until 2024. While it is a good thing that disability activists and experts were listened to, there is no amount of legal or ethical tinkering with legislation that can do away with the systemic discrimination against disabled and poor people built into the capitalist system. As the current crisis of social services across the whole of North America shows, without the proper resources needed to function, having a “right” to healthcare or welfare is just words on paper: the extra costs needed to accommodate the sick, poor, disabled, and marginalized groups through social spending are expendable. When a crisis hits and profits are threatened, these are the first costs to be cut. It is easier — and cheaper — for the capitalists to administer the right to death, framing it as “dignified dying” and “compassionate,” than providing funding for the right to live.

As socialists, we are not opposed to assisted suicide, which in the majority of cases is a dignified alternative to prolonged suffering. But as long as disabled people are denied the means to a dignified life where their needs are met by society, assisted suicide programs will inevitably be coercive and discriminatory. The only way to ensure that the right to death does not come at the expense of the right to life is through a universal, accessible, fully-funded healthcare system under the democratic control of the working class and inclusive of everything from disability to psychiatric illness. But the crisis of the capitalist system has shown the inability of this system to provide for the needs of society, pushing these services to the brink of destruction — it is only through the socialist reconstruction of society that the resources of the whole economy can be mobilized to meet the needs of all, rather than the private riches of a few wealthy capitalists.

Complete Article ↪HERE↩!

Posted on

End of Life Care for People with Developmental Disabilities

Why talking about this taboo subject with your loved one early on is important

Charlotte Woodward and her mom, Darcy Woodward

By Beth Baker

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so. 

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

A person smiling at home. Next Avenue, developmental disabilities, end of life care
Charlotte Woodward

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

Complete Article ↪HERE↩!

Posted on

What happens if you’re incapacitated?

— How to get your advance directives in order.

By Morey Stettner

It’s not fun to do advance directives. But there are ways to make it simpler and easier.

There are some thorny tasks that everyone knows they should tackle.

Every so often, they think, “I should do this.”

Then they don’t.

Take advance directives. You’ve surely heard that you should think ahead and consider the type of healthcare and medical treatment you’d want if you become incapacitated.

If you don’t make these decisions now–and complete the necessary forms to state your wishes–someone else will make the decisions for you later. You know that, right?

For some of us, procrastination isn’t the only barrier to checking this off our to-do list. Confusion plays a role as well.

Just as it’s hard to track our immunizations (when did you get your last tetanus shot or pneumonia vaccine?), it’s tricky to recall when (or if) we filled out advance directives.

“People sometimes forget they filled out the forms,” said Scott Brown, president and chief executive of ADVault, a Richardson, Texas-based provider of advance care planning tools

If you did sign them, where are they? Who knows about them? Are they easily accessible if you’re suddenly unable to convey your wishes?

Advance directives typically consist of a living will and a power of attorney for healthcare. Each state has its own statutory advance directive form. To find your state’s legal form, use the menu bar at PREPARE for Your Care.

Because these state forms are legal documents, the wording can be dense and formal. The Five Wishes advance directive, which meets legal requirements in most states, is written in plain English.

After completing the proper forms, you might think you’re all set. You’re not. The forms won’t magically plop into the hands of medical providers as they’re weighing whether to, say, resuscitate you during a medical emergency or administer artificial feeding or hydration.

“Most people adopt a ‘set it and forget it’ mentality,” said Scott Halpern, M.D., director of the University of Pennsylvania’s Palliative and Advanced Illness Research (PAIR) Center. “They may never revisit it. That’s why advance directives tend to not have an impact because they get lost” and complacency sets in.

Halpern suggests that individuals initiate conversations with both their physician and their family and close friends about their “concerns, values, goals and fears” as they relate to advance care planning. For example, tell them what forms of medical intervention you’d find acceptable and unacceptable–and what level of life-sustaining treatment you’d like if you’re deemed permanently unconscious.

J. Randall Curtis, M.D., is director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine. He’s also been diagnosed with ALS.

“I’ve completed a living will and a durable power of attorney,” he said. “But I think much more important than these documents is having in-depth and ongoing discussions with my wife, closest friends and my palliative care physician to make sure they understand my values and goals and my current views of ‘states worse than death.'”

When sharing your end-of-life wishes with your doctor, it’s likely that your clinician will enter your comments into your electronic health record. Once that happens, any other healthcare provider with access to those records (such as a hospital system) can retrieve them.

What if you’ve completed multiple forms over time? Perhaps an estate-planning attorney or doctor prompted you to fill out advance directives years ago. A decade later, a financial adviser urged you to do so. Now you have duplicative forms that may contradict one another. Laws vary by state when it comes to which end-of-life wishes take precedence.

“It’s usually last-in-time,” Brown said. “The most recent document” holds sway.

To be safe, review your advance care plan every year or two. Changes in your health, personal relationships or attitude about life-sustaining treatment can lead you to change your directives.

Complete Article ↪HERE↩!

Posted on

Some people think they would rather die than have help brushing their teeth

– but care is not tragic

‘My personal assistants and I, live life at full speed’ (posed by models).

For disabled people like me, care can be brilliant and has enabled me to experience university, holidays abroad and nights out dancing with pals. There is nothing to pity in that

By

I’ve seen it so many times: the head tilt, the look of concern and sympathy. You would think I had just announced a family bereavement, rather than mentioned that, because of the nature of my disability, I need 24-hour care.

This response is not unusual. The thought of a relatively young person (I’m 27) needing care generates pity like nothing else. Behind the condescension, I suspect there lurks a specific dread: the reminder that, one day, you too could need care. The horror!

The thought of having care workers conjures all sorts of unpleasant images, including the idea of a life cut short and potential unreached. Care, to most people, is the bad thing that happens before you die. But to need care long before it becomes end-of-life-care signifies a failure of youth; the epitome of tragedy.

Well, I’m here to tell you that’s not true. For disabled people like me, care is brilliant, fulfilling and life-enabling. It is so good that lots of us are desperate to receive more of it, instead of wishing that we needed less. The choice is not between a life with care and a life without it, but between a life with care and no life at all.

There is a fundamental misconception about what care entails. People often assume it to be much more clinical than the reality. Yes, my personal assistants (PAs) dress me, wash me and take me to the loo, but they also come shopping with me, cook me tasty dinners and share a pint with me and my friends in the pub. We spend a lot more time laughing (usually at ourselves) than we do thinking about the bathroom (itself the site of much hilarity). Is this really what it looks like to live a tragic life?

The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.

Of course, relying so heavily on a team of care workers has its downsides, from recruitment to managing rotas, to just wanting to be alone sometimes. It’s hard. But life is hard for many people – yet no one would turn to someone who’s just been made redundant, for example, and say: “If I were you, I don’t think I could go on.” Some people seem to think they would rather die than have help brushing their teeth. It truly boggles the mind.

Many fail to see the possibilities that care creates – not to mention the friendships that flourish within the care relationship. My PAs, past and present, are some of my best friends – but even this sentiment can give rise to unwanted sympathies. People assume it means I can’t make friends elsewhere (for the record: also not true). My PAs are my friends not because they have to be but because we like each other. And because the bonds of trust, understanding and a shared lived experience are incredibly strong; often, they are the only ones who really see the effect inaccessibility and ableism have on my life.

Receiving care is anything but a tragedy. My PAs and I, live life at full speed. I defy anyone to look at us – really look at us – dancing round the kitchen or popping out for dinner, and feel sorry for us.

Complete Article ↪HERE↩!

Posted on

How Dying Taught Me to Live

By Brad Dell 

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.

I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.

The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.

But my time came.

Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.

While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.

Somehow, I survived.

The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.

I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.

Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.

Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?

I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.

It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.

I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.

Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.

Complete Article ↪HERE↩!