PALLIATIVE CARE AND HOSPICE– SIMILAR BUT NOT EQUAL

Many years ago I attended a lecture by one of the leading proponents of truly excellent hospice care in this country, Dr. Ira Byock. I can still remember being totally shocked when he stated (my translation):

Hospice has met the enemy, and the enemy is palliative care.

That’s perhaps a little over-dramatic, but that is the essence of what he was trying to convey. This was an audience of mostly hospice people– nurses, doctors, social workers and a few volunteers like myself. At that time, we were part of a very small contingent  in this country who were familiar with the term “palliative care” — because it was at the heart of what we offer to our patients and families.

The World Health Organization’s official definition of palliative care is:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

This is perfectly in line with the aims of hospice care. So what on earth could Dr. Byock possibly mean when he seemed to be drawing a distinct line between palliative care and hospice care? As he explained it to us, “palliative care” was now a formal discipline, a recognized sub-specialty within the medical ranks. Once exclusively the domain of hospice care, palliative care had moved into the hospital setting. One could become a palliative care doctor and have no affiliation whatsoever with any hospice.

On the surface, this seems like a good thing: more doctors specializing in minimizing pain and suffering. Hard to argue with that… But as Dr. Byock carefully pointed out, the potential threat to really excellent hospice care had its basis in the problematical public head-in-the-sand attitude towards even the very word “hospice”. We have been a death-avoiding culture for multiple generations, and therefore have pretty much avoided educating ourselves about end-of-life options. Many well-educated people in this country today still draw a blank when the term “palliative care” comes up. The core problem is this:

The general public  knows virtually nothing about either palliative care or hospice care. For the most part, both are once-in-a-lifetime experiences– which means that we are not, and feel we do not need to be sophisticated consumers of either. Not yet, anyway…

That lack of understanding is vastly complicated by a financial motive which remains hidden: hospitals suddenly have a vast new source of revenue in the form of  patients who might formerly been outside of their domain. The general public cannot discern the seemingly small but potentially huge quality-of-life impacting differences between a non-profit hospice and a hospital-based palliative care program. The latter has a great deal more financial leverage as far as advertising, and is therefore in the position of being able to create and force-feed to the public a self-reinforcing new paradigm of palliative care that can suffocate the true essence of hospice.

You’re probably asking yourself at this point: So what exactly ARE the differences between the medical discipline known as palliative care and true hospice care? The palliative care movement would like you to believe that the only difference is that hospice care is for the last 6 months of life,  while palliative care can start  any time. Folks, it is not nearly that simple. As a 26-year hospice veteran whose  husband received end-of-life care from a hospital-based palliative care team, I am in the unique position of being able to draw some distinctions based on actual personal experience.

To be very succinct:

Hospice care IS palliative care.

Palliative care is NOT hospice care.

To be even more succinct, I’d like to borrow the explanation of a dear friend who has worked in this field for decades: the difference comes down to pronunciation and financing.

Palliative (pay-lee-a-tive) care = you (the consumer) pay

Hospice care = they (the hospice organization)  care

This may sound a little crass and way overly simplistic, but it actually gets right to the heart of the basic difference between the two disciplines. I notice with great interest that the American Society of Clinical Oncology has weighed in on this subject only a few days ago (January 31, 2011) on their website. The distinction, according to ASCO, is that palliative care is NOT end-of-life care. Reading between the lines, I am quite sure that the palliative care movement has finally figured out that one of the obstacles to acceptance of the services they offer is the perception that palliative care is tantamount to giving up on life and living– which is a common misconception about hospice care as well. Therefore  the palliative care movement is trying to put as much distance as possible between itself and hospice care.

I’m here to tell you that the difference is far greater than this huge over-simplification. True palliative care began with hospice, decades before the formal discipline now referred to as “board certified in palliative care”. Hospice care IS palliative care. The key difference lies in these words from the WHO definition:

“impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”

Hospice care, the kind of hospice care that I  see on a daily basis in  our hospice, delivers on this promiseimpeccably. In my experience and the experience of my friends, palliative care– at least the version we have experienced in our various locations in the country– is woefully lacking in the psychosocial and spiritual aspects of care.

Despite our palliative care team’s proud trumpeting in their informational brochure that they “care for the whole you–body, mind and spirit”,  the sad reality was that the care they delivered was strictly care of the body. Not only did the team not care for John’s mind and spirit, but they actively (albeit unintentionally) sabotaged John’s and my peace of mind on a regular basis.

Let me break our experience into two categories: care of the physical body and emotional/spiritual care. In the category of care of the physical body, I include diagnosing the cause of the physical problem/pain, choosing the appropriate drugs to correct the problem/alleviate the pain, and careful monitoring of the dosage. In this domain, our palliative care team was mediocre by the high standards set by the hospice of which I am a part. Many times, I was the one who diagnosed the cause of the symptom or the source of the pain, rather than the doctor or the nurse. Many  times, it was my dear friend who is the clinical director of our hospice who suggested drug remedies that the palliative care doctor hadn’t even considered. The majority of the time, I was the only one who was closely monitoring the dosages of the drugs and the side effects created by them.

It was in the emotional/spiritual realm that this palliative care team really failed us miserably. Not only  were the nurse and doctor not supporting us– frequently they actually created rather than alleviated our stress and anguish.

Would you like to learn more about palliative care from a sophisticated consumer’s first-hand perspective? The rest of this chapter in Shedding Light on the Cancer Journey   http://www.amazon.com/dp/B004T3331M  explains what palliative care should provide for its patients, what to look for in evaluating the services that you actually receive, and why you could be underserved by opting for palliative care  rather than hospice care at the end of life.

You have stumbled upon a rare opportunity to learn first-hand from another cancer patient’s four years of experience in navigating the  cancer maze.

Our doctors told us we were the most informed patient team they had ever encountered– yet we felt utterly lost a great deal of the time. Every cancer patient I’ve talked to felt the same way. We learned so much about The System, and how critical being  an informed patient is to getting the treatment you need, how to deal with difficult doctors, troubleshooting and taking charge of pain control– and so much more, none of which you will hear about from your doctor.

You owe it to yourself and your loved one to benefit from all that we learned the hard way.  This is the kind of information that, until the publication of this book, could only become part of your database by living through it and  realizing in retrospect how all the pieces fit together: colon cancer from the patient’s and caregiver’s point of view.  $9.99 seems like a very small price, considering the emotional and physical suffering you will likely be saved by learning from our experience.

Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze   http://www.amazon.com/dp/B004T3331M  can now be read on any computer or other reading device. The reader interface is available free from Amazon and is downloadable in seconds.

I will realize absolutely no profit from the sale of this book.  All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.

About these ads

About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
This entry was posted in doctor patient communication, doctor patient relationship, end of life, hospice, Uncategorized and tagged , , , . Bookmark the permalink.

One Response to PALLIATIVE CARE AND HOSPICE– SIMILAR BUT NOT EQUAL

  1. Eve-lynn says:

    WOW, wonderful and succinct article explaining the differences and very difficult problems with our hospice vs. palliative care. Thank you for spending so much time in sharing your heartfelt emotions and understanding of both of these areas. Your own personal experiences in these realms are written with an amazing ability to give each of us a birds-eye view of this chasm between the two disciplines in their caring for the dying.

    Please keep up the excellent dissemination of this important information. I know it consumes a great deal of emotional energy for you to share the innermost experiences of your dear husband John.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s