When Facing a Serious Illness, Palliative Care Can Ease Pain and Anxiety
Over the past year, several people I know have been diagnosed with serious illnesses. They’ve undergone equally serious treatments including surgery, chemotherapy and radiation. For them and for their loved ones, it was a time for “all hands on deck.”
However, I believe that a number of hands were missing.
When I asked my friends whether or not they were also getting palliative care, the response was an emphatic, “No! I don’t need that.” Given how misunderstood this medical specialty is, that is not surprising.
In my opinion, whether you or someone you love is facing a serious illness, you should consider palliative care. These ailments can include heart disease, COPD, kidney disease, complications of diabetes, HIV/AIDS, Parkinson’s disease or other neuromuscular conditions. You should consider palliative care as those essential extra hands on deck to help you and your caregivers through pain and side effects of treatment. They can also help with emotional distress.
The Center to Advance Palliative Care (CAPC) points out, “Palliative care gives back control to people when their lives seem completely uncontrollable. The patient is asked the question never heard in the hospital: What are your goals for this stage of life?” It is coordinated care, with a team of physicians, nurses, social workers, chaplains and others, perhaps pharmacists, nutritionists, even massage therapists, focused on the quality of your life.
Defining Palliative Care
Margaret Thomas Kahdeman is the Associate Medical Director, Palliative Care and Hospice at NorthShore University Health System Chicago. She offered one of the best explanations I know about palliative care. She said, “I tell my patients that my work with them is twofold. First, we need to know what’s most important to them, what gives their life quality. We need to know if there are things that are really important for them to accomplish.
Second, we want to define what’s getting in the way of them being able to do those important things. We need to work on those barriers, be they physical or emotional, so that we can help our patients achieve that optimal, meaningful quality of life.”
A Growing Young Specialty
Palliative care is still a relatively young specialty, dating back to 2006. This was when the American Board of Medical Specialties (ABMS) approved the creation of hospice and palliative medicine as a subspecialty of 10 participating boards.
The number of U.S. hospitals offering palliative care services has been growing substantially, too. According to the American Hospital Association Annual Hospital Surveys and data from the CAPC’s National Palliative Care Registry™, 67 percent of U.S. hospitals with 50 or more beds have palliative care teams. This is up from 63 percent in 2011 and 53 percent in 2008. Of course, that means that roughly one-third of U.S. hospitals of 50 beds or more do not offer palliative care.
Looking ahead, there are still open questions. Whether or not palliative care will ultimately become more widely available in community settings rather than hospital settings. We might also ask if there will be a sufficient number of specialists to care for aging baby boomers in decades to come.
5 Misconceptions About Palliative Care
What is palliative care? Because it is still a relatively new specialty, perhaps physicians are reluctant to recommend it to patients. Maybe it is simply not available in some geographic areas. Many people still harbor some misconceptions about what this care is all about. Here are just five:
You only need palliative care if you are close to death
Palliative care is available to you at any stage of serious illness. Evidence shows that the earlier you receive palliative care, the better not only for you but for your caregivers as well.
Palliative care is just another term for hospice
Unlike hospice, palliative care is available concurrently with any treatments aimed at curing you. And unlike hospice, you don’t need a prognosis of six months to live, either.
You need to be on Medicare to access palliative care services
Palliative care is available no matter your age.
If you have palliative care you cannot continue with your existing team of physicians and specialists
The palliative care team works in conjunction with your existing team, not in place of it.
Once you and your team have agreed on your goals of care and a plan for treatment, you cannot change your mind about them
The heart and soul of palliative care is communication; think of it as an ongoing conversation. As illness changes or progresses, you may feel differently about how you want to proceed and your palliative care team will work with you every step of the way.
Aiding Loved Ones with Dementia
If you’re caring for a loved one with dementia, palliative care can help too. As Ann Wyatt, Residential Care Policy and Strategy Consultant at CaringKind in New York City, points out, it involves discovering “what comforts someone and even gives them pleasure, and taking steps to prevent or avoid unnecessary pain and suffering before they take hold. The more advanced the dementia, the more helpful palliative care can be.”
In a nursing home setting, for example, palliative care would include identifying and managing pain better. It would require being more flexible about what, when and how much people can eat. Also it might focus on allowing people to sleep and wake on their own schedules.
Do you think palliative care would help you or someone you are taking care of? The CAPC offers excellent resources for patients and caregivers on its website. This might include where to find palliative care. It also offers a useful questionnaire that you can fill out to see if palliative care is right for you:
If you think palliative care could help you or a loved one but your physician has not mentioned the possibility, do not be shy! This is their life, after all. Ask for help!
Have you ever used palliative care with a friend or family member? Did you think palliative care was the same as hospice care?