The Need for Palliative (Humane) Care

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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.  We all want to be loved and comforted; we all want and need to be supported when we are seriously ill and we want a gentle and dignified passing when it is our time.   Everyone is going to pass from this world (hopefully to a better place).  We need a healthcare system 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; curative/restorative treatment, as well as complimentary treatments, are allowed and provided.  Often this care is provided by an interdisciplinary team.  It is care to help heal, if possible, and improve the quality of life for anyone who is seriously ill.  It should start as soon as someone receives a serious diagnosis.
Recently I learned there are national PCHETA (Palliative Care Hospice Education and Training Act) bills, HR 3119 and S641 that need to be passed.   Here’s a summary of HR 3119.   These PCHETA bills would help to educate medical professions and help make palliative care become the Standard of Care for healthcare everywhere.  These are some of the organizations that are supporting the PCHETA bills.   (Click on members)
Palliative care was originally going to be a covered benefit in the Affordable Care Act.  Sadly, without any understanding of this essential care, Sarah Palin called this care “death panels.”  Mrs. Palin and some others caused so much fear and concern that it was removed as a benefit before ACA went into effect.  Recently however, a bill was passed that would allow physicians to receive payment for essential conversations with seriously ill patients.   “In a proposed regulation released July 8, 2015, CMS introduced two new billing codes—previously recommended by the American Medical Association—for advance care planning provided to Medicare beneficiaries.”  This regulation would allow “physicians and other health professionals to bill Medicare for advance care planning, as a separate service, starting January 1, 2016.”  It is a good first step!  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.  Many medical professionals however, do not know how to speak to/with seriously ill patients and their family members.   They need to be educated.  The PCHETA bills would help provide that essential education.
No one is prepared to deal with a serious medical condition until it happens to you or to your loved ones.  My own story begins nine years ago when my husband Joe was diagnosed with metastatic pancreatic cancer.
From the moment we learned of the mass on Joe’s pancreas to the day that Joe passed on, we were confronted and confounded, by a medical system that was uncoordinated, and unable to deal effectively, with what became Joe’s 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!
I don’t believe that anyone caused Joe’s passing; I accept it was his time.  But if there had been a comprehensive plan in place, with specified criteria, which would have indicated if and when Joe needed services, it would have done a lot to help us deal more effectively, with the overwhelming crisis of Joe’s illness, and his impending death.
These are some of the problems we encountered.  The gastroenterologist said his office would set up an appointment for Joe to have a pancreas and liver biopsy.  But they didn’t schedule the biopsies in a timely manner.   I had to repeatedly call the doctor’s office, begging and pleading, for them to schedule the biopsies.  It took nearly three weeks to get a biopsy; Joe was in substantial pain by that time, and we were both very anxious.  It was horrible!
While waiting for the biopsies, in desperation, I began looking for an oncologist.  A man I knew recommended his.  However, this doctor’s manner was so dehumanizing, that when we left his office it was as if we were already dead.
He silently read the reports of Joe’s MRI and CAT scans in front of us, making faces of horror.  Then he gave Joe a cursory exam, left him sitting on the examination table, and turned to me.  Looking in my eyes he said, “No hope;” Joe was sitting just a few feet away.  No matter what I said or asked, this doctor had something negative to say in reply.  Without hope there is no life!
All this time, Joe was in pain. Because we didn’t have an oncologist, our family doctor was writing emergency scripts, which had to be refilled every 48 hours.  I watched my husband counting out pills, to see if he would have enough to last for 48 hours, knowing he needed a higher dose (the tumor was pressing on a nerve in his back), but being afraid to take more, lest he run out before we could get the next script filled.
Due to medical complications caused by his cancer, Joe was rushed to Albany Medical Center.  There the nightmare continued!  AMC didn’t have a palliative care program.  Joe suffered needlessly and excruciatingly.  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.
After Joe passed I asked friends and associates what they would want to be told if they were given a serious or life threatening diagnosis.  Our friend George said it best.  He said he would want to be told, “You’re very sick but we’re going to do all we can to help you.”  That is all anyone can ask!
I also spoke with  a psychiatrist who told me that in a living will, in addition to requesting that you want meds to reduce pain and suffering, you should also stipulate that you want meds to reduce anxiety, as the dying process itself can produce anxiety.
Shortly after Joe passed, in my ongoing quest to get better care for patients and their families, I also began to write to Dr. Diane Meier, Director of CAPC (The Center to Advance Palliative Care) at Mt Sinai  We’ve been corresponding since.  Dr Meier was awarded the Medal of Honor by the American Cancer Society and is a MacArthur Genius Award recipient for her work on palliative care.
This summer Dr. Meier had me invited to speak at the National Academy of Medicine’s Institute of Medicine in Washington, at a conference about Health Literacy and Palliative Care.  See link below for my presentation.
Panel 1: Perspectives of a Patient’s Wife – Institute of …
At the conference there were many wonderful medical authorities there who shared their expertise about the necessity for palliative care and how it should be administered in various situations.  The conference discussed the need to not only provide palliative care literacy for the public, but for the medical establishment as well.
Following is the Commentary written by Diane Meier and me.
I believe Diane Meier asked me to speak about what happened to Joe and me because sadly, our story typifies the stories of so many other patients and their families.  I want to prevent what happened to Joe and me from happening to others.    Palliative Care is the way to ease pain and suffering, possibly extend life, and maybe even heal or cure someone.  Perhaps we should call this care “Life Panels.”  In fact, palliative care is so essential that World Health passed a resolution calling for “all public health systems worldwide to integrate palliative care into their national health services.”
Combining the practice of Palliative Care with Single Payer/Medicare for All would help to fulfill our sacred spiritual obligation and also reinforce the principles and ideals of our nation.  We must demand that quality healthcare be available to us all!  Critically, chronically ill people just cannot wait!
I urge everyone who is reading this post to contact your elected officials and have them pass the national PCHETA (Palliative Care Hospice Education and Training Act) bills, HR 3119 and S641.  We need a humane healthcare system which provides compassion, support, and medical equality for all!