Palliative Care: very few of us understand the actual meaning of these words, including most physicians, and certainly the public at large.
Palliative care has traditionally been aimed at relieving suffering and improving quality of life for patients with advanced illness and their families. It is provided by an interdisciplinary team and is offered in conjunction with all other forms of medical intervention. Vigorous pain control and symptom management are integrated into all stages of treatment.
If you or someone you love were sick, whether in the hospital or at home, palliative care is something you would most likely want while trying to recover – to have someone ask, “How are you?” and to have the tools to make you feel better with minimal pain.
During childbirth, most women want to reduce their pain and have their nausea controlled.
Getting your wisdom teeth out? Good pain control and a little post-procedure ice cream are just what the dentist orders.
These are examples of palliative care. They are not solely for the end-of-life.
Roots in End-of-Life Care
Much of the misunderstanding about palliative care comes from its origins in the care of the dying. Although the concept has been around for a long time, its scariness stems from the idea that it is seems preferable to hospice, an area in which there is even more misunderstanding and misinformation. Some people think that in hospice everybody dies, and that with palliative care, at least we have a chance.
The types of situations that call for palliative care interventions beyond pain and nausea are shortness of breath, coughing, diarrhea, constipation, major unintended weight loss or gain, incontinence, muscle spasms, fatigue, insomnia, anxiety, depression or a loss of faith and meaning in life from illness.
A thorough goal of care discussion with the patient is conducted. Is your goal to survive as long as possible with maximal intervention? Are you interested in comfort over survival? A hybrid of the two?
Not so long ago, these areas were the provinces of our primary care providers. But as some high-tech care is performed at specialized treatment center far away from our usual providers, someone on the scene has to step in, and coordinate the treatment interventions for the underlying illness. Think burn units, not just cancer centers. Advanced illness? Yes. Dying? Not necessarily.
A Conspiracy of Silence
Our general suspicion and lack of understanding of palliative care is also a function of feeling at least a bit misled. As illness progresses and just isn’t responding to whatever treatment we are getting, a difficult discussion is warranted, but none of us want to do so. This phenomenon is called a conspiracy of silence.
From the physician’s perspective, it takes too much time, makes us feel like failures, brings up many sad emotions, anger and even fear of litigation. The son or daughter from Seattle/Los Angeles/Boston will be on the phone later, angry and wanting to know why you’re giving up on Mom/Dad/Brother/Grandma.
From the patient’s point of view, it can be perceived as the doctor giving up on me.
Families often feel guilty that they are powerless to fix the situation and want to know that they tried everything, even if those interventions are likely ineffective.
Hospitals and consultants, under our current system, see profitable tests and treatments being stopped, with bona-fide reimbursement issues.
Hence the conspiracy of silence. This is a talk no one wants to have. It’s just easier to try another antibiotic, a little more diuretic, or some spot radiation therapy and let things get worse on their own.
If it’s hard to broach the concept of palliative care at such a juncture, imagine the knee-jerk response most people have when it is brought up early, even when someone is expected to get better and live for a long time. You think: What are they not telling me?
A Blessing in Disguise
The common sense solution is to focus on the goals of palliative care early in the diagnostic process, so they can guide the process rather than trail it. This leads to better care all the way through our illnesses. Such a discussion, as frightening as it seems on the surface, guides our life’s activities, not just our medical treatment.
What could be more meaningful than a life well-lived, beyond merely improved medical care?
That insight, far from the Grandma’s Death Panels of recent political discourse, can open us up to making choices that enable us to live better, in sickness and in health.
Read Stewart Fleishman's book:
Learn to Live Through Cancer: What You Need to Know and Do