What is Palliative Care?

In presentations, I always describe ‘palliative care’ as a ‘fifty-dollar word for comfort care’’.  In truth, it means so much more, and I’m not sure I can do it justice.  A friend and colleague believes palliative care is the answer to all the woes of our health care system.  I agree with her.  It’s actually quite a brilliant notion.  But I get ahead of myself.

The Center to Advance Palliative Care defines palliative care this way:

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.

The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.1

Palliative care is different from every other part of the health care system we know in the U.S.  It is the part of the health care system that soothes.

The Era of Medical Specialists

In our current model, a biophysical, medical model of health care where the goal is to fix a problem or cure a disease, medical specialists rule.  Don’t misunderstand me – if I shatter the bones in my hand in an accident, I want an orthopedic surgeon expert in repairing broken hand bones to fix me.  If I contract a lung disease, I want to consult a pulmonologist – a lung doctor.  If I want to discuss my health care in terms of the quality of my life, however, I want to see a palliative care expert.

All of medicine used to be palliative in nature.  In the nineteenth century, the pathway of an illness causing death was a short one.  The typical cause of death was infectious disease; death occurred in the home; and medicine accepted death, making comfort a priority.  The symptoms of the illness were obvious – nausea, vomiting, fever – and everyone knew the person was dying.2

When the germ theory of disease evolved in the 1800s and it became known that specific germs caused defined diseases in specific parts of the body, everything changed.  Now we have specialists that focus on specific diseases or specific parts of the body.  Today, the goal is to treat the affected body part.  Today, the death of the whole person is viewed by many in medicine as a failure.2

Living Longer

Years ago, as a new nurse, I was appalled to once hear a surgeon say of a hospitalized individual who was dying, “Never mind him.  He can’t be helped.”  In retrospect, I know the surgeon was not being cold and insensitive.  He meant, “I can’t help him.”

Achievements in medicine are helping people live longer.  In 1900, the life expectancy of a male was 46.3 years and that of a female was 48.3 years.3  In the early 21st century, those numbers have increased to 75.5 years for men and 80.5 years for women.4  Consequently, individuals are now faced with making decisions about their health and health care that we did not have to contend with when the human life span was shorter and death came more quickly.

Coordinating Care of Serious and Chronic Illness

Today, we live longer, many of us with chronic illness.5  The nature of chronic illness is that it cannot be cured.  Rather, one learns to live with it.  Examples of chronic illness include congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD).  We may see a cardiologist (heart doctor) or a pulmonologist but we cannot rid ourselves of these diseases once we have them.

If you or someone you love has encountered the current health care system in the U.S. because of multiple health issues, you know that you (or they) are responsible for coordinating all of the care.  You must interpret everything you are being told by each specialist, process it all through your own quality of life filters, and then determine a course of action.  Should an elderly parent with Alzheimer’s receive open heart surgery? Should a person nearing death from an incurable cancer be put on a ventilator after an automobile accident?  These are extremely difficult, complicated questions.

Enter palliative care.

Palliative Care Treatment

Palliative care is provided by a team of professionals, each with a different expertise:  physician, nurse, social worker, chaplain and nurse aid.  These individuals work together to provide professional support to individuals with serious or chronic illness that will improve their quality of life.  The care provided by this team is holistic.  Because of the make-up of the team, they can address all the components that make us who we are – our physical, emotional, social and spiritual selves.

Rather than focusing on the disease, palliative care experts focus on the person and how that individual can best live with their illness(es).  The person receiving the care determines what success looks like because it is based on their personal values – what they think is important for their own quality of life.  The symptoms of illness that cause discomfort are treated – i.e. ‘palliated’ – so that they are not disabling.

Palliative care can be delivered simultaneously with curative care.  You don’t have to give up one to receive the other.

The Future of Health Care in the U.S.

Let us return to the idea that palliative care could be the answer to the troubles of the health care system in the U.S.  I wrote about futile care in a different blog.  It is defined as care that neither lengthens life nor promotes quality of life.6  Quite often, futile care is also expensive.  What if quality of life drove all the decisions we made about our own health care?  What if we could consult a palliative care expert for all the decisions we must make about our care to ensure we are considering all the variables, all the possible outcomes?  To have the symptoms of our chronic illness controlled so that the discomfort doesn’t control us and our decisions?

There are some who would argue that the only ethical choice is to provide all possible care to an individual, regardless of the effect on quality of life.  A physician I know tells a story of an ICU nurse who wants to die in an ICU because that way she would know everything possible had been tried.

For myself, I would rather die comfortably and peacefully, in the company of people and critters who care about me.  But while I am living, when I need to make decisions for myself about coordinating the care of multiple illnesses or conditions and navigating how to live with the symptoms, if my insurance doesn’t cover palliative care, I will pay for it.  Even if it costs more than $50.

 

Theresa Lynn, RN, PhDc
Certified Thanatologist
Executive Director
Wings of Hope Hospice

1Center to Advance Palliative Care.  (2014).  Retrieved from http://www.capc.org/

2Corr, C. A. & Corr, D.  (2007).  Culture, Socialization, and Dying in Handbook of Thanatology:  The essential body of knowledge for the study of death, dying, and bereavement.  D. Balk (Ed.)  New York:  Routledge.

3Berkeley, edu.  (n.d.).  Life expectancy in the USA, 1900-1988, men and women.  Retrieved from http://www.demog.berkeley.edu/~andrew/1918/figure2.html

4U.S. Census Bureau,  (2012).  Expectation of life at birth, 1970 to 2008.  Retrieved from

http://www.census.gov/compendia/statab/2012/tables/12s0105.pdf

5Institute of Medicine of the National Academies. (2012).  Living well with chronic illness:  a call for public health action.  Retrieved from http://iom.edu/~/media/Files/Report%20Files/2012/Living-Well-with-Chronic-

Illness/livingwell_chronicillness_reportbrief.pdf

6Huynh, T. N., Kleerup, E. C., Wiley, J. F., Savitsky, T. D., Guse, D., Barber, B. J. & Wenger, N. S.  (2013).  The frequency and cost of treatment perceived to be futile in critical care.  AMA Internal Medicine, 173(20), 1887-1894.

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