Category: Disability

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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↩!

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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↩!

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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↩!

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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↩!

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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↩!

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Palliative Care for MS

What It Is, When It’s Helpful

Palliative care can relieve emotional and physical suffering at any stage of MS.

By

This approach to MS care focuses on quality of life and may be beneficial at any stage of the disease.

In recent years, there’s been a movement among many multiple sclerosis (MS) healthcare providers to integrate palliative care into their practices.

When most of us hear the term “palliative care,” if anything comes to mind, we probably think of hospice care — measures taken at the end of life to ease suffering and maximize comfort.

But palliative care is an approach that may be beneficial to anyone who experiences suffering due to a health condition, whether they’re just diagnosed or have lived with it for years. And it’s on the rise among MS care providers.

From 2005 to 2014, the percentage of people with MS in the United States who received palliative care increased from 0.2 to 6.1 percent, according to an article published in December 2018 in the Journal of Clinical Neuroscience.

But as these numbers show, most people with MS still don’t have meaningful access to palliative care, and there are still many misconceptions among both doctors and patients about what palliative care involves and how it applies to MS.

Here’s what palliative care means in the context of MS, when and how it might be helpful, and how you may be able to incorporate it into your treatment plan.

What Is Palliative Care for MS?

Palliative care describes an approach to providing healthcare, rather than any specific type of treatment. While there’s no precise definition, experts agree that it means treating more than just symptoms.

“How do you maintain quality of life? That’s really the crux of what palliative care is,” says Rachael Stacom, an adult nurse practitioner and senior vice president of population health at Independence Care System in New York City. “It’s about comfort and relief of suffering.”

“The way I explain it is looking at ‘disease-centered’ versus ‘person-centered’ care,” says Benzi Kluger, MD, a neuropalliative care specialist at UCHealth University of Colorado Hospital and professor of neurology at the University of Colorado School of Medicine in Aurora.

“In disease-centered care, the primary focus will always be on the patient, meaning a person defined by their illness,” says Dr. Kluger. “Whereas in palliative care, the primary focus is on people who can define their illness” and what’s important to them — including not just the patient, but also family members and any caregivers.

A palliative care approach, Kluger emphasizes, means “helping people with medical symptoms, but also with difficult emotions — things like grief, guilt, loneliness, caregiver burnout.” This approach can be adopted by many different kinds of MS healthcare providers, including neurologists, primary care doctors, and nurses, and it doesn’t require any specialized training in palliative medicine.

In addition to what’s known as primary palliative care — where the approach is a routine part of MS care — there are also specialized palliative care programs for people with advanced MS who need extra services focused on easing a large disease burden and getting optimal caregiver support.

Whether it’s provided as part of normal MS care or as a specialized program, palliative care means that providers and patients are discussing what they hope to accomplish together, and what to expect over time.

“Our goal is to help people anticipate if things are getting worse, and to have open and honest conversations about functional decline,” says Kluger, as opposed to focusing only on medical treatments aimed at slowing disease progression.

When Palliative Care Can Help for MS

Stacom helps oversee a community-based long-term care program for people with physical disabilities, many of whom have MS. But she says that palliative care can help people with MS long before they would sign up for a program like hers.

“For people with a potentially progressive neurologic disease, suffering happens right at the time of diagnosis,” she says. “Some people think that ‘suffering’ is a very strong word, but there’s a significant amount of stress” that comes with MS at all stages.

Many people with MS experience what’s known as anticipatory grief, Stacom says — meaning that they’re grieving the loss of function that may come with MS even before it occurs, according to an article published in the July–August 2014 issue of Social Work Today.

In this context, palliative care soon after an MS diagnosis means discussing, “What’s going to happen to me? Am I going to wind up in a wheelchair? It’s about allowing space for those conversations to happen, and understanding what that person values,” she says.

Kluger notes that many people are looking for a “road map” as soon as they receive an MS diagnosis. “They don’t want to be feeling their way forward one day at a time in the dark. They want more clarity around their diagnosis, and what to expect” he says.

But even if palliative care isn’t used from the beginning of MS treatment, it can be helpful later on, says Kluger. “As the disease progresses, there may be different triggers for either referral to a specialized palliative care program, or stepping up the palliative care approach.”

Several years into having MS, many people are struggling with pain or fatigue, greater disability or loss of mobility, or planning for a future in which they may need a caregiver, says Kluger. At this point, a palliative care approach can focus on managing symptoms that have grown more complex, and on managing difficult emotions.

When someone has advanced MS, a palliative care approach can focus on increased emotional support, supporting caregivers, and providing home help and other social services. If someone is near the end of life, it may also include hospice care.

At any point in this continuum, someone with MS may benefit from a specialized palliative care program — as described in an article published in October 2015 in Multiple Sclerosis Journal — “if they’re at a point where pain management or fatigue management goes beyond what their primary neurologist feels comfortable with,” says Kluger.

Someone with primary-progressive or secondary-progressive MS may choose to make a specialized palliative care program their main “medical home,” Kluger says, since there may not be much that a neurologist can do for them in terms of traditional disease management.

Kluger has found that at all stages of MS, palliative care can result in better symptom control, especially with pain and fatigue. Often, he says, patients report a better quality of life once they begin a palliative care approach to their care.

And when people with MS start having conversations with their doctor about their future, “they’re empowered to take more control over healthcare decisions” through advanced-care plans, preparing for potential hospitalizations, and eventually arranging end-of-life care in a way they see fit.

Getting Access to Palliative Care for MS

Unfortunately, most people with MS aren’t offered a palliative care approach by their regular healthcare providers. “Neuropalliative care is a relatively new field,” Kluger explains, and even if medical providers are receptive to the idea of palliative care, that doesn’t mean they offer specialized services, like home-based care.

For more people with MS to gain access to palliative care, there will need to be “a grassroots push to move the field towards this,” says Kluger. “I really encourage patients and families to talk to their doctors about it. They really see the need for this, oftentimes more than physicians do.”

Stacom believes that palliative care hasn’t caught on more quickly because, among other reasons, “it requires a power shift, where the person becomes the one leading the care, as opposed to the healthcare provider. And I think that’s a hard thing for us to do” as providers, she says.

But Stacom remains convinced that healthcare will move in the direction of palliative care, for MS and other conditions. “Person-centered care is where healthcare is going now. I think that as healthcare providers, we have a unique position to be a partner, and support people to lead a full life.”

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Even in Grief, I Still Have Pride

Being part of the disability community means constantly losing friends and allies. I don’t expect that to change.

By Robyn Powell

“Kristen has passed away.” I’ll never forget learning that my best friend died. I was only 11 years old. We lived in the same town and attended school together. She had spina bifida as well as problems with her kidneys. After years of dialysis, it was kidney failure that ultimately killed Kristen.

Now, at 37, I have lost count of the number of loved ones who have died. I do know that it is well over 20. Friends have died. Colleagues have died. Romantic partners have died. Even my first love died a few years ago. Each year I lose at least a few people I care about, and I don’t expect that to change. The deaths of people close to me are something I have come to accept.

Just last month, my friend Carrie Ann Lucas died after her health insurer refused to cover the medication she needed. Yes, she had a progressive disability but its symptoms were exacerbated because she did not receive adequate health care.

Other pioneers in the disability community, whom I looked up to, also died recently. Dr. Anita Silvers, a professor of philosophy at San Francisco State, died after complications from pneumonia. Professor Mike Oliver from the University of Greenwich in England died after a short illness. Oliver is known for developing the social model of disability.

I was born with arthrogryposis, a disability that affects my muscles and joints. I use a power wheelchair and have limited use of my arms and legs. Being disabled is normal for me. Indeed, it is all I know. It is also something I am incredibly proud of.

But each time a disabled friend dies I find myself questioning many things in my life. And one recurring question is this: How I can I maintain my disability pride when I am always surrounded by death? It is not always easy. In fact, at times it can feel insurmountable. While some of my friends have died because of their disabilities, others have died because of broken systems that devalue the lives of disabled people.

Some disabilities are associated with shorter life expectancies, but many are not. And, because of advances in technology and treatment, people with disabilities once considered terminal are living longer. Stephen Hawking, who lived for decades with A.L.S. proved that. Nevertheless, being part of the disability community means being surrounded not just by the life and support, but by death.

Research shows that people with disabilities die younger than nondisabled peers. Sometimes our life spans are shortened because of our disabilities, but that is not always the case. In one study, researchers found that disabled people are more likely than nondisabled people to die from heart disease, cancer, stroke, respiratory disease, accidents suicides and assaults. And while physical and circumstantial factors are at play, it is often the way we are treated that contributes to early death.

Disabled people encounter significant barriers to accessing health care. We are more likely to die because of police brutality (the rate is especially high for disabled people of color), and more likely to experience violence victimization. Also, disabled people often live in poverty and experience material hardships.

I have been around disabled people my entire life. The disability community is where I feel the most comfortable to be myself. They understand my experiences — both good and bad — and offer great insights without trying to fix me or my disability. They don’t see our disabilities as tragedies or something to be ashamed of. They appreciate how much it sucks when an airline breaks my wheelchair or a personal care assistant doesn’t show up, but they also recognize how important disability pride is.

Being a part of the disability community has made me who I am — and I don’t just mean in the physical sense. I have had beautiful and rich experiences, not in spite of, but because I am disabled. I have met truly amazing people whom I would never know if I weren’t disabled. Having a disability has also informed my life’s work. First as a social worker and now as an attorney and researcher, I have committed myself to fight for disability rights. My disability and the experiences I have had make me better at my work. I likely wouldn’t be in this field if I weren’t disabled, but I am thankful that I get to do this work.

Not everyone understands disability pride, which is apparent when a disabled person dies and nondisabled people nearly always repeat the same ableist remarks: “They are no longer suffering.” “She is now free to run.” “He is finally cured and now dancing among the angels.” I can’t say hearing these things doesn’t get to me; it does. These comments diminish the lives both of the dead and the living. Most of us are fine not running; we are not suffering, and we do not want to be cured.

During difficult times, I sometimes find myself wondering why I allow myself to continue to be surrounded by death. Having disabled friends means frequent loss. Death and disability are uncomfortable bedfellows. But to avoid this constant grieving would mean to rid myself of a community that I love.

In some ways, I believe that being surrounded by death has allowed me to live a more fulfilling life. I try to cherish my time with loved ones, intensely aware that it could be the last time I see them. I also strive to live in the moment, appreciating the little things in life. Because I have experienced so much loss, I know the importance of celebrating the good times.

Death is unavoidable. But as a disabled person, I am all too aware that death and disability are inextricably linked. Because of my disability, I have an enriched life. I have also experienced tremendous heartbreak. In the end, I have come to understand that I will love, and I will grieve. There’s something almost freeing about accepting that harsh reality.

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