by Rebecca Gagne Henderson PhD APRN ACHPN
The Original Schism
In 1054 AD a Roman Catholic Cardinal was sent to the Metropolitan of the Eastern Orthodox Church and excommunicated the entire Eastern church. The Eastern Bishop declared anathema on the Roman Catholic church. Oh, the Irony amongst these fine men who carried the mantle of the original apostles fighting over who is the greatest. Whatever happened to the “Last shall be first”?
The Palliative Schism
I bore witness to such a schismatic proclamation this year whilst watching a European Palliative Care webinar. It included a panel of four physicians, a public health expert, and Kevin Toolis, an author who often opines upon the subject of death and dying. Toolis also happens to be a friend.
It immediately occurred to me that there was no representation from any other members of a typical palliative interdisciplinary team (i.e. Nurses, Social Workers, Chaplains, Nurses Aides). The panel spoke of palliative care in a manner which excluded the roles of the other disciplines. I listened, waiting to hear about the contribution of nursing to the field…it never came. More than three-quarters through the presentation I texted my “concerns” about the exclusion of the mention of nursing to Toolis.
The palliative gods were listening because within one minute after texting my friend one of the female physicians on the panel made a proclamation. She said, “We all just need to be honest about this…Palliative Care is a medical model”. Those are fighting words in my book. My friend interjected, “I just received a text from my friend who reminds us that it is the nurse who sits with the dying and ushers them gently into death”. Damn, what a wonderful poet! His statement was much more eloquent than the text I sent, and he didn’t even use profanity.
Nurses Dame Cicely Saunders and Florence Wald
I have also heard medical doctors state that physicians started palliative care. This is an alternative version of reality and history. Granted, Dame Cicely Saunders, the founder of the modern hospice movement, was a physician. It is important to note that before she was a physician, and even before she was a social worker, the Dame was a nurse. Ask any nurse and they will tell you, “once a nurse, always a nurse”. Saunders left nursing after a back injury which hindered her ability to care for her patients.
I recall when I was an undergraduate nurse, a professor told me that once I graduated and became licensed that people would listen to me. Then I was told that once I received my Master of Science I would be a credible source. I was then told that I would be considered an authority and have a voice once I received my PhD. Now I have been told that I would need to be famous to be taken seriously. I often think that Saunders became a physician to amplify her own voice
Those who were her greatest allies in forwarding the hospice movement were nurses. In 1974, Florence Wald, a nursing professor at Yale University founded the first hospice in the U.S. In 1980, she was instrumental in the opening of the first inpatient hospice at which time she developed the requisite 10 principles of the hospice. Those included:
- The patient and family are regarded as the unit of care.
- Services are physician-directed, and nurse coordinated.
- Emphasis is on control of symptoms (physical, sociological, spiritual, and psychogenic).
- An interdisciplinary team provides care.
- Trained volunteers are an integral part of the team.
- Services are 24 hours a day, 7 days a week, on call, with emphasis on the availability of medical and nursing skills.
- Family members receive bereavement follow-up.
- Home care and inpatient care are coordinated.
- Patients are accepted based on health needs, not on the ability to pay.
- There are structured systems for staff support and communication.
Note that these principles were incorporated into the hospice benefit. The Center for Medicare Services was adopted in 1983. Across the country, most hospice care was and is delivered in patient homes. That care is led by RN Case Managers with a team which includes a chaplain, social worker, and nurse’s aide. All these members are equally important to the care and well-being of the patient and family. Often, the family never meets or speaks with a physician during their entire stay on hospice.
Also, note that the second and fourth principles are inclusive. From the beginning, nursing recognized the holistic need of the patient and the need to have all hands-on deck. The palliative discipline is based on a nursing model. This requires an understanding of the purpose of nursing, specifically palliative nursing.
The Contribution of Nursing
When I started practicing, as hospice nurses, we taught hospice physicians how to titrate opiates, educated them about why we don’t decrease tube feedings for long periods, and how to provide palliative sedation, amongst other things. I would call physicians for orders, and they would tell me to write whatever I thought was necessary and they would sign it. My medical malpractice defense attorney husband warned me “No matter how many pink boxes of doughnuts they bring to the nurses, I assure you, if it is you or them, it will be you who is thrown under the bus”. This was the reason I became a nurse practitioner.
Whilst writing my palliative PhD thesis I discussed with Sally Thorne, the nurse theorist who wrote “Interpretive Description”. I asked for permission to adopt her definition of nursing’s purpose and refer to it as the goals of palliative nursing, to which she agreed. Nursing is an integration of the social sciences and biomedical sciences. As described by Thorne, Palliative Nursing’s raison d’etre is the “amelioration of human distress, the accommodation of frailty, to counter the personal vulnerabilities of illness and sickness, and to make meaningful sense of the indignities which are caused by the failures of our bodies and minds”. I think it is fair to say that these are the core values of all palliative care, but these goals are derivative of nursing.
The Over-Medicalization of Death
Recently, there has been a movement towards the over-medicalization of death, even by palliative physicians. This shift from Palliative Care to Palliative Medicine (#HPM) is leading to increased complications in the typically simple act of dying. This harkens back to when the medical establishment forced legislation that would restrict community midwifery, which was provided mostly by African American, indigenous and immigrant women. There are ramifications for the exclusion of lay experts, even those who learn through apprenticeship. When midwives were replaced by physicians infant mortality and infections for mothers and infants skyrocketed,
A New Reformation
I know that many will frown upon this strong pro-nurse stance and read it as my pronouncement of anathema pitting physicians against nurses. This is not the case; rather, it may be read as my attempt to electronically nail 95 provocations to the door of the Castle Church. It is time for a nursing reformation where nurses stop being so polite and demand respect for their contributions to the field of nursing and palliative care. It’s nice to see MDs trying hard to be more like nurses. They are starting to go back into the community and are working on better communication skills. These are good things. I just read yesterday that my alma mater, The University of Southern California has started a residency program for treating the homeless on the streets. Pshaw…I was taking my Azusa Pacific University community nurse students under the bridge on skid row and homeless shelters in Los Angeles 15 years ago. Historically, nurses have always had a penchant towards community health, with an emphasis on the care of the sick and poor. Nurses were doing this before it was reimbursable under a fee-for-service payment scheme.
Nurses can no longer accept being told by physicians that it does not matter who gets the credit as long as the good work is being done. How many palliative care programs across the U.S. have been started by nurses, chaplains and social workers in the hospital only to have them taken over by “physician leadership” after the heavy lifting had been done? We’ve been told that this is “teamwork” or “collaboration”. I call it gaslighting.