A Dozen Changes Over a Dozen Years

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By Judy Lentz, RN, MSN, NHA 
CEO, Hospice and Palliative Nurses Association 

As I near retirement, I can’t help reminisce about the changes I have experienced in my twelve years as CEO of the Hospice and Palliative Nurses Association (HPNA).  Although hospice began in the United States nearly 35 years ago, the past 12 years have been explosive in expanding the philosophy, increasing utilization and moving the care upstream earlier in the disease trajectory thereby branding the service with a new name – palliative care.

Hospice in the United States has been altered by legislative action and regulatory guidelines to fit a restricted time limited care delivery which requires certification by physicians to assure the disease will cause death in 6 months or less if the disease follows its normal course.  These restrictions have created limited acceptance by hopeful Americans thereby generating greater acceptance for a less regulated, less restrictive and more palatable care delivery model called palliative care.

Initiated in 1995, palliative care been more available to those experiencing serious illnesses who want options, to be able to make their own choices, to be in control, to receive holistic person centered care provided by an expert interdisciplinary team and to seek all options available to improve quality of life as the patient/family define it.  Matching treatments to the person’s preferred goals of care is the focus of those involved in palliative care with no timelines, no limitations, no denial of options.    As the serious illness progresses, the team of care providers support and information to assist in decision making and recommend hospice when appropriate.  This allows the patient to experience each day to the fullest while preparing for a peaceful dignified death with bereavement support for the family thereafter.  This trajectory can be days, weeks, months, or years in length.

When I was hired by the HPNA twelve years ago, palliative care was a vision.  Now a dozen years later, palliative care is a reality.  Changes that I have experienced include:

1) Broad expansion of palliative care services in hospitals in the United States

2) Clinical Practice Guidelines for Quality Palliative Care have been written, revised and widely disseminated

3) Palliative Care Medicine has become a subspecialty

4) Certification is now available for all members of the nursing team, physicians, and others

5) Research has expanded widely

6) Legislators recognize the need to refocus care for those with serious illnesses

7) The National Quality Forum have written 38 preferred practices

8) Consumer based advocacy groups have rallied to improve care of the dying

9) Numerous health care educational resources have been developed

10)Palliative Care outcome measures have been proposed

11)The Joint Commission has offered a new certification for high quality palliative care programs

12)Consumer awareness has been heightened

So what does the future hold in terms of palliative care?

I believe the next decade will give us many answers.  Based on what I have experienced thus far, here is what I predict will happen by 2020:

  • all Americans facing serious illnesses will have access to palliative care as defined by the Clinical Practice Guidelines for Quality Palliative Care
  • general palliative care principles will be incorporated into all clinical practice and specialty palliative care will be the gold standard for progressive serious illnesses
  • health care in the United States will be the envy of the world because Americans will be fully informed and able to make the decisions that are right for them based on their own personal wishes rather than the recommendations of others as well-meaning as they may be
  • you and I will know that we are in control of our healthcare decisions and we will rejoice in the knowledge that waste, fraud and abuse are no longer a part of healthcare practices for the seriously ill in the U.S.

My predictions are lofty but achievable if we start now to assure full disclosure of health care information is accompanied by consequences of decisions and options are routinely made available.  Decision-making loops begin with the evidence, followed by the relevance, consequences and then appropriate actions can be determine and acted on.  Then and only then can the “right” decisions be made.

I am very hopeful for the future of healthcare – especially if the voices of all Americans are heard.  Without this approach, our future seems bleak and fraught with problems.  Let’s join together to make our future bright.  It’s our right!!