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Who Will Care for Us When Quality of Life REALLY Matters?
posted 08.06.2015

By Helen B. McNeal

As a Baby Boomer, I am always dismayed when my fellow Boomers—who are all familiar with the purpose of Viagra, Pradaxa, OxyContin, Metamucil and Tamoxifen—don’t know what palliative care is. I shouldn’t be surprised since the World Health Organization (WHO), the Center for Medicare and Medicaid Services (CMS) and your local health system or hospital can’t agree either. But, if you are over 65, there is a 90% chance that you have at least one serious or chronic condition and you should understand the importance of palliative care and why there is so much confusion about what it is.

Excellent palliative care resources for anyone—professional or consumer:

CSU Institute for Palliative Care – Online education and resources for professionals and consumers

Center to Advance Palliative Care

Coalition for Compassionate Care of California

Get Palliative Care – For consumers

General reading recommendations:

Being Mortal by Dr. Atul Gawande

The Best Care Possible by Dr. Ira Byock

More in-depth reading:

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life – IOM Report, 2014

A Roadmap for Success:Transforming Advanced Illness Care in America, W. Novelli and T. Koutsoumpas with Boe Workman, Editors

Consumers generally confuse palliative care with hospice. That’s not surprising. Both share a common philosophy of interdisciplinary whole-person care. The difference is that hospice is only available in the last six months of life and that, in order to have hospice, the patient must stop all curative treatment. Palliative care is appropriate from point of diagnosis onwards and is intended to go hand-in-hand with curative or disease-modifying treatments. Palliative care has been demonstrated not only to improve quality of life but also to help those with a serious illness live longer and improve the satisfaction with care of both the patient and their family. If this is the case, why don’t health care organizations agree on what palliative care is?

Aside from the issue of confusion with hospice, the reality is that even today the United States does not have a sufficient workforce to meet the demand for palliative care in its full definition. The 2008 Institute of Medicine report, Retooling for an Aging America: Building the Health Care Workforce, stated “As the population of older adults grows to comprise approximately 20 percent of the U.S. population, they will face a healthcare workforce that is too small and critically unprepared to meet their health needs.”

A 2010 report (Lupu and American Academy of Hospice and Palliative Medicine Workforce Task Force in Journal of Pain and Symptom Management, “Estimate of current hospice and palliative medicine physician workforce shortage”) estimated a national shortage of palliative care physician specialists of between 6,000 and 18,000 practitioners. In California today, there are less than 1000 board-certified palliative medicine physicians to care for 4.3 million people over the age of 65 with chronic or serious illness. The numbers of certified hospice and palliative care advanced practice nurses and registered nurses is even smaller, 96 and 929 respectively.

In the face of these shortages, hospitals and community based palliative care programs have been known to equate palliative care with end-of-life care, restricting access to those who should be on hospice but refuse to stop curative treatments, or to those who simply cannot accept that they or their loved one is hospice appropriate. Other such artificial limits include only accepting patients with less than one year to live. The result is that if you request a palliative care consultation at point of diagnosis, it is likely to be denied or you will be faced with “Why would you want that? You’re not dying.”

At the CSU Institute for Palliative Care, we know that to change this situation everyone working in health care needs to know what palliative care really is. Along with increasing the number of palliative care expert team members, every clinician needs to have a generalist or basic level of palliative care skills. These skills include not only knowing what palliative care is but how to have difficult conversations; how to support advance decision-making and advance care planning; the fundamental, discipline-specific skills that enable a practitioner to provide relief of symptoms and/or the psycho-social, emotional and spiritual support that patients may need; and how and when to refer to an expert palliative care team. This level of education takes individual and organizational commitment, but it is vital.

While we have trained almost 1,100 professional in two years, we know our work is just beginning. To this end, the CSU Institute for Palliative Care, in collaboration with LeadingAge California and the Coalition for Compassionate Care of California, is completing a Palliative Care Workforce Assessment in order to better understand organizational palliative care workforce plans. Our goal is to leverage this data to increase awareness of the urgent need to invest in training the workforce necessary to care for seniors and all those in need of palliative care.

And what can ASA members do? Until we have a workforce more knowledgeable about palliative care, each of us who, today or in the future, may need palliative care for ourselves or those we love need to become advocates for what palliative care really is—not just end-of-life care, but quality-of-life care. We need to do this until palliative care is as talked about and understood as Viagra!

Helen McNeal is the Executive Director of the California State University Institute for Palliative Care located at California State University San Marcos. She has also been instrumental, both in the United States and Canada in helping to advance the field of palliative and end-of-life care. Click here to learn more about Helen.

This article was brought to you by ASA's Healthcare and Aging Network (HAN).

Confusion about palliative care

Yes, it's true. When my dad was at his end-of-life stage, I learned (too late) that palliative care was available to him all along. He lived with Alzheimer's Disease and suffered a great deal in the later stages. We learned too late that palliative care could have helped him sooner. I'm glad to know that professionals like Helen are here to enlighten us. 
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