What It Is, When It’s Helpful

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

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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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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