By agebuzz Contributing Editor Julie Buyon
One of the best-kept secrets in the world of health care is palliative care. I say “secret” because even though this board-certified medical specialty has been available for more than a quarter-century, many people still don’t understand it. Many doctors don’t fully understand palliative care either, and consequently, don’t suggest it or seek it out for patients who would benefit. So a Powerhouse Patient needs to know what palliative care is, when to ask for it and how to get access to it.
What is palliative care?
I like to think of palliative care as a giant hug enveloping you and your family when you have a serious illness. Palliative care (aka palliative medicine) is a medical specialty focussed on providing an extra layer of patient and family support, helping patients feel better and live better. It is offered by a team of experts that usually includes a physician, nurse, and social worker who have special training in managing the distressing physical symptoms and emotional turbulence that often occur with a serious illness. This team of expert clinicians watches out for you, listens to you, and helps ensure that your medical treatments are supporting your goals, needs, and values. They are especially concerned with managing pain and other distressing symptoms that may affect your quality of life. In short, the palliative care team has your back.
How do I know if palliative care is right for me?
Do you think that having holistic care that relieves the symptoms of your illness, whether or not it can be cured, helping you live comfortably with a good quality of life, sounds like a good idea? Do you:
If you answered yes to any of these questions then palliative care can help. (Take a look at a broader list of considerations at GetPalliativeCare.org).
Help with those things sounds great, but shouldn’t my regular doctor be helping me with all that?
Yes, they should and often do! But palliative care doctors (and other experts) have specialized training in managing pain, discomfort, anxiety, and other symptoms that interfere with your life. They provide practical advice that helps you get through treatment, as well as day-to-day support for you and your family by spending time talking with you about how your illness and the treatments impact your life. They are concerned with you as a whole person, not only the physical part of you that is sick.
Even though your primary care physician knows a lot about your particular condition, chances are you are seeing a disease specialist because of their training and expertise in treating your illness. Similarly, palliative care physicians have expertise in symptom management, relieving suffering, and helping patients and their families cope with the challenges of living with a serious illness.
Why isn’t my doctor suggesting palliative care for me?
Many doctors incorrectly think that palliative care is the same as hospice care, which it is not. Hospice care is a subset of palliative care and is appropriate for people approaching the end of life. Palliative care can be helpful at any stage of a serious illness, even one that you will live with for many years.
Some doctors think that the palliative care physician will replace them as your doctor, which is not correct. The palliative care team works with your current doctor – just as an anesthesiologist works with a surgeon. They each have different expertise but work together to provide the best care for the patient. Palliative care experts are usually brought in as consultants for specific aspects of your care needs.
Lack of awareness and understanding of palliative care is such a barrier for patients across the country that, according to the National Academy of State Health Policy, more than half of states have passed legislation to promote palliative care so that more patients can access it.
Does getting palliative care mean that I am “giving up”?
No! As Palliative Doctors explains, “the goal of palliative care is to make you comfortable and help you achieve the best possible quality of life. You can have palliative care while you are undergoing treatments that may cure or reverse the effects of your illness. In fact, palliative care can help you cope with aggressive treatments by getting your pain and symptoms under control to help you fight the disease.” The goal is to help you live well – and you define what “live well” means for you.
Is palliative care the same thing as hospice care?
No. Hospice care is a type of palliative care and is appropriate for people who likely have 6 months or less to live. Palliative care is appropriate at any stage of a serious illness, with any prognosis, and at any age. In fact, studies have demonstrated that cancer patients who receive palliative care along with treatment for their illness live longer – and live better than patients who don’t receive palliative care.
Is palliative care covered by insurance?
Yes, it can be. Services provided by palliative care doctors and nurses are usually covered like other medical care by insurance, Medicare, and Medicaid. As with all medical care, it’s a good idea to check with your insurer to learn what is covered for your specific situation.
How do I get palliative care?
Palliative care is most often available in hospitals – in fact, 81% of hospitals (with more than 50 beds) offer palliative care. If you are hospitalized, ask your doctor to request a palliative care consultation. If the doctor resists, be insistent or call the Palliative Medicine Service yourself – you should be able to find their phone number on the hospital website. Palliative care is also available in many nursing homes. More and more home health agencies are now offering palliative care services in the home, and palliative medicine doctors and nurse practitioners are increasingly found in large medical practices so you can make an appointment as you would with any other doctor. This directory can help you find palliative care near you in all these different care settings.
You deserve this.
I have had the privilege of working as a palliative care patient advocate at a hospital for several years. Time and again I witnessed patients’ pain and distress eased by the doctor and nurse on the palliative care team. I confess I came to see them as superheroes, such was their power to transform pain into ease, distress into calm, confusion into knowledge, and fear into peace. When you know someone really has your back and will walk by your side for as long as you need them, it can enable you to face some of life’s toughest challenges. As a palliative nurse practitioner I know once asked, “Who isn’t deserving of this kind of care?”
As readers of this blog understand, knowledge is one of a Powerhouse Patient’s greatest assets. If you, or someone you care for, have a serious illness, discuss adding palliative care to your health care team with your doctor. If your doctor doesn’t think it is appropriate for you, ask why not. A Powerhouse Patient, armed with a directory of palliative care providers, can connect directly with a palliative care clinician and determine for themselves if palliative care can help.
Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].
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