Woman

Anyone who has had a serious illness, or has been a caregiver, knows that there is a moment when you realize that you have to be a champion of your own care, or the care of your loved one. You realize that every decision counts, and you feel the weight of that responsibility.

Sure, you may have a top-notch doctor or may be getting treatment at a world-class hospital, but there is always a part of your care that you have to figure out yourself. It may be deciding whether or not you are going to undergo surgery. Or determining the best way to talk to your kids about your illness. So you research your options; you ask more questions. But the urgency of finding help when you are already burdened with serious illness can be totally overwhelming.

The sad thing is that you don’t realize this until you’re already in a state of crisis. For me, it was when my mother was in the hospital. Her dementia had been getting worse and then she was hospitalized for pneumonia. I got a phone call from an internist at the hospital who wanted permission to insert a feeding tube. I was at work and didn’t know what I should do. I thought that the doctor must know what he’s talking about, so I said yes.

In our case, this was a really bad decision for several reasons. One reason was that my mother could still swallow and eat regularly. But it was taking a long time to feed her, and the doctors wanted to speed that up, so they pushed for the feeding tube. So she underwent the surgery and the pain of having a feeding tube inserted, without consideration of how uncomfortable that might be for her, or the fact that it would make her even more incapacitated. She only lived a couple months longer and I regret that I found this all out too late.

The truth is that I feel guilty to this day that I made that bad decision; that I caused my mother unnecessary suffering. Because even though I was doing the best I could do at the time, I didn’t feel comfortable with my decision. I didn’t feel supported at all in making that kind of decision. And I didn’t feel like there was a clear path to manage my mother’s care based on what she and I valued most–her comfort and quality of life.

Since then, I’ve learned that your best chance for surviving an illness and for living a good life when you’re sick, happens when you are really championing your health care or the health care of your loved one based on your values. I’ve also learned that you don’t have to be the only champion.

So here is the big secret: you don’t have to do it alone.

When I became the Director of the Partnership for Palliative Care, I learned that there is a whole field of health care, called Palliative Care, dedicated to helping support you if you are a patient or a caregiver dealing with a serious illness or a chronic disease so that you can live the best quality of life possible, according to your values and wishes. I also learned that the best thing you can do if you or someone you love is sick is make sure you have access to palliative care in addition to your regular care, because it can help you live better, longer, and happier.

Right now, I know you are asking, what is palliative care?

Palliative care is defined as specialized health care and supportive services that help you manage the symptoms, pain and stress of your illness to allow you to achieve the highest quality of life possible. Members of a palliative care team can include, doctors, nurses, social workers and therapists who work in collaboration with your regular doctor and provide services like pain and symptom management, guidance with treatment choices, help navigating the healthcare system, and emotional and spiritual support. Put simply, palliative care makes sure you are not the only person championing your care or the care of your loved one.

How do we know that palliative care works? We know because it has been embraced by both the medical community and those that have had the benefit of it, as care that keeps people more independent, helps them live longer, and leads to greater patient and family satisfaction. It’s also expanding faster than ever. In the past five years, the Partnership for Palliative Care, in collaboration with other palliative care organizations, has reached its goal of making palliative care available to patients in more than 87% of hospitals nationwide.

This is wonderful news, except that we have a long road ahead to make palliative care available to everyone who needs it beyond their stay in a hospital, including in their homes, in assisted living residences, and in nursing facilities. The biggest obstacle is that most people have either never heard of palliative care or think it’s hospice care (wrong). So, because of this, most of us (like me and many of my friends and colleagues) don’t ask for and don’t receive palliative care. We want to change that.

At the Partnership for Palliative Care, our staff and board is made up of patients and caregivers, and our mission is to help other patients and caregivers understand supportive care services so they can get them when they need palliative care most. We are not doctors or administrators. We are not funded by pharmaceutical companies. We have no hidden agenda. Some of us have been lucky enough to benefit from palliative care. And some of us haven’t and feel an urgency to do something so that more people don’t go through what we went through.

That’s the main reason the Partnership is gearing up to launch a new education initiative in 2014. As a first step, we are starting this blog, called Restoring Quality of Life. We want to spend the next year listening and sharing what we learn with you. We plan to share stories from patients and caregivers, members of palliative and supportive care teams, along with invited experts. We want to talk candidly about how palliative and supportive care can help you get through your illness in the best shape possible, and we plan to highlight practices and treatments that have proven success.

We plan to grow the number of resources and stories available on this blog, so check back and subscribe for updates. And take a second below to let us know what you are interested in knowing about palliative and supportive care. We want to hear from you!

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About Kathy English

Kathy English has been passionate about patient advocacy for many years. In her last position as Director of Personnel for Rockefeller & Co., she introduced patient navigation and advocacy as a benefit for all employees and their families. Since joining the Partnership for Palliative Care in 2011 as the Executive Director, she has expanded its initiatives to educate patients and their families experiencing serious or chronic illness about palliative and supportive care. She has worked to increase the number of educational programs and job opportunities for palliative care professionals, and she has also led efforts to make palliative and supportive care available in all community settings from the time of diagnosis of a serious illness.