Palliative Care: Coordinated, comprehensive care to reduce pain and suffering for anyone who is given a life-threatening or life-altering diagnosis

July 23, 2010

by Bev Alves

During our lifetime, many of us will face life-threatening or life altering illnesses or injuries, or perhaps we will watch those we love face them.  Everyone is going to pass from this world (hopefully to a better place).  We need a system in place that can provide support, guidance and direction to those who are facing these challenges. This system is called palliative care.

Palliative care is a medical specialty which provides coordinated, comprehensive care to reduce pain and suffering for anyone who is given a life-threatening or life altering diagnosis.  It is care to provide comfort and support for the patient and for the patient’s loved ones.  This medical specialty differs from hospice in that you are not required to have a six month or less, prognosis, and curative/restorative treatment is allowed and provided.  Palliative care does not just provide care to those who are dying (which is an essential hospice service); it also provides care to those who are ill, and can be or might be, healed or cured.

It is very difficult to understand another’s suffering.  No one can feel another person’s pain.  Our brains have been wired this way in order for us to survive.  Although we may not understand another’s suffering we can and must provide treatment to reduce it.  Because medical treatment has become so complicated and demanding of providers, often it’s too much to expect those who are focused on the complex technical aspects of treatment to also be focused on easing the pain and suffering of the patient and the patient’s family members. It now takes another field of expertise. This is why palliative care is so essential. According to the Joint Commission, “Palliative care is an approach designed to improve the quality of life of patients and their families by relieving the pain, symptoms and stress of serious illnesses such as cancer or AIDS.”  The Joint commission proposed standards for palliative care certification that became effective in August 2008.  (It would also be a good idea to make palliative care part of the curriculum in all medical schools. Then, even if doctors don’t specialize in it, they would be aware of its importance.)

In the fall of 2006, my husband Joseph was diagnosed with pancreas cancer.  From the moment we learned of the mass on his pancreas to the day that he passed on, we were confronted and confounded by a medical (non) system that was uncoordinated and unable to deal effectively with his excruciating pain, our anxiety, stress and impending loss.  Although Joe had full medical coverage, there was no system in place to help us get the care he needed.  We were left on our own, without guidance, without support (to secure even essential tests and treatments),  and without adequate pain medication.  We were alone.  Palliative care would have provided an essential support network, directing us to get him the treatment and care he so desperately needed, right from the beginning.

In practice, palliative care would be the medical equivalent of an IEP, an individual education plan.  It could be considered an IMP, an individual medical plan, for anyone with a serious or potentially serious medical diagnosis.   When a patient and his family are in crisis there needs to be a plan to help them locate appropriate services, provide the best treatment options and help them transition to the most appropriate environment. There was none.

Because of medical complications which his cancer produced, Joe wound up in Albany Med. According to data from CAPC (The Center to Advance Palliative Care), Albany Med is one of only four teaching hospitals in the entire United States that does not provide this type of care.  Although the staff there was basically good, there was no coordination of care there.  The analogy I use is, it should have been a ballet; instead there were a whole bunch of great ballroom dancers.  If there was a comprehensive plan in place with specified criteria which would indicate if/when services were needed, it would have done a lot to help us deal more effectively with the overwhelming crisis of Joe’s illness and his impending death.  Perhaps I could have even taken him home for the last few days of his life, as was his/our wish.

Joe was a remarkable man.  He was not bitter or angry when he became ill; instead he tried to make it easier for those who were helping him.  During the course of his terrible illness he barely complained, even though his pain level in the hospital was never less than 8 and at times it was “off the charts”. He also had a lot of anxiety.  As it was explained to me by experts (not affiliated with the hospital), Joe’s pain was feeding his anxiety and his anxiety was exacerbating his pain. No one should have to be in this much pain and anxiety in a hospital.   A palliative care program would have gone a long way in helping to ease Joe’s suffering and my grief at seeing it.

Two years ago, during my first trip abroad, I went to Israel.   While there, I had the opportunity to speak with Dr. Shragit Greenberg, from Ben Gurion University in the Negev.  She is one of Israel’s leading experts on palliative care (and a wonderful person too).  We discussed the importance of alleviating pain and suffering.  She told me as others had, that “It is known that if a person has less pain, less anxiety and fewer problems they can fight more and do better”.  She emphasized that “Palliative care should be initiated from the beginning, increasing the intensity of care as an illness progresses”.  She also said palliative care does not preclude restorative treatment.  It is an adjunct to treatment, helping a person to heal if possible.  Its main purpose is to alleviate pain and suffering, whether a cure is possible or not.

There is a tremendous need for education for both the medical establishment (the providers), and the public who are unaware that this type of essential care even exists.   When people are ill they need help and support to navigate the system, as well as to find pain relief, comfort and cure if possible. It is a sign of our humanity that we provide necessary support to those who are ill, and to those who love them and/or care for them.

In January 2009, palliative care was included as a covered benefit in the single payer bill, HR 676, Expanded and Improved Medicare for All.  It is covered benefit number 8.   (Unfortunately, the new health care bill that has recently been passed, ironically titled, The Patient Protection and Affordable Health Care Act, still does not include palliative care as a covered benefit.)  Due to ignorance and fear, some people have actually labeled this essential care as “death panels”. It is essential that we first educate ourselves about palliative care, and then advocate for its inclusion in any bill that calls itself Healthcare Reform. The United States is the only industrialized nation in the world that does not have a healthcare system.  On the basis of equality, we must demand that quality healthcare be available to us all.  Critically, chronically ill people just can not wait.


6 Responses to “Palliative Care: Coordinated, comprehensive care to reduce pain and suffering for anyone who is given a life-threatening or life-altering diagnosis”

  1. Betsy Rosenthal on July 24th, 2010 12:39 pm

    thank-you for your excellent discussion of this issue. It is a crime and a disgrace that our governement does not provide this, as well as health care generally for ALL residents of our country!
    Betsy Rosenthal

  2. Laura on July 26th, 2010 11:34 am

    Great article Bev. As a mom to a daughter who was born with a life altering illness, I can attest to Albany Meds. Complete lack of coordinated care. I support you 100% in your push for Palliative Care as a covered benefit. Thanks for fighting for all, even those who don’t realize they will someday need it. Laura

  3. Rebecca Elgie on July 29th, 2010 8:33 am

    This is certainly an important issue and your work Bev to have it included in HR676 is truly valuable. You have brought this important issue to the conscience of the public and hopefully our politicians – we need to continue to push for a health care system which truly serves the interest of the patient not the insurance companies. Rebecca

  4. Linda Haile on July 30th, 2010 8:40 am

    Thank you, Bev, for writing such an important essay about palliative care. I certainly understand it much better and I am in support of you and all others that are trying to make this an essential part of healthcare. I also advocate for the single payer system and hope that the U.S. can improve its healthcare overall. Thanks again, Bev, for such a well-written essay.

  5. Betsy Zucker on August 5th, 2010 12:58 am

    Thank you for advocating to get palliative care included in HR 676 – kudos! I enjoyed meeting you, another single payer activist, in Detroit! As a nurse practitioner, I know too well that palliative care, and humane coordination of services, can mean everything at the end of life- for both the person in pain, and their loved ones. Be well!

  6. Jim Siegel on August 5th, 2010 7:28 am

    Bev — Thanks to CAPC’s Diane Meier posting it on Twitter, I discovered this. You present so well the benefits of palliative care and how important it is to educate the medical community, policy makers, and the patients and families who should learn about palliative care and to ask for it when they need it. I’m sharing your essay with my HealthCare Chaplaincy colleagues. Thank you!– Jim Siegel