This is in response to Roz Byrne’s recent letter, “Learning about end-of-life options” [Viewpoints, March 11], inviting citizens to an upcoming program sponsored by the Illinois End of Life Options Coalition.
I was disappointed that Ms. Byrne did not mention the most effective resource currently available to those in the situation she described regarding her father in the intensive care unit: that is, palliative care consultation. This option may not have been readily available when Ms. Byrne’s father was ill, but for over the past 15 years it has been available to the vast majority of hospitalized people in the U.S. and many other countries. Almost all hospitals today have a palliative care medical specialist or palliative care consultation team available. Patients and families can request a consult.
Palliative care is a recognized sub-specialty by the American Board of Medical Specialties (ABMS), and for advanced practice and registered nurses, by the American Board of Nursing Specialties (ABNS). Palliative care is most often consulted for difficult pain and other symptom management but can also be consulted when a patient is questioning treatment options, are not sure they want to continue current treatment in the face of failing health, and/or are asking about hospice care or comfort care.
Whereas hospice is only available for those deemed to be at end-of-life, palliative care can be consulted any time, including while patients are still pursuing or receiving curative care for their illness. Palliative care takes a holistic approach: treatment needs, symptom management, the patient’s goals for care (e.g. curative vs. comfort care only), quality of life, family support needs, and how these issues impact each other. Palliative care works with the patient’s primary medical team, as any specialty consultant such as a cardiologist does. More and more, palliative care is also available in outpatient and home care settings as well.
The Illinois End of Life Options Coalition’s stated goal is to work to “authorize medical aid in dying and ensure that terminally ill people who want it can access it,” in other words advocating for legal euthanasia or assisted death. In over 35 years as a hospice and palliative care practitioner, I have cared for and overseen the care of, thousands of end-stage patients. In my experience, very few people with end-stage illness requested help to die early when they were able to receive robust symptom management, care and support. Research has continued to support this.
I feel that the option of ending life early is needed for very few, if at all, and is fraught with ethical and other problems. Conversely, expert palliative care has proven itself to be needed and beneficial for most people facing any serious illness, even from the time of diagnosis. In my personal written advance directives (Power of Attorney), I have included directions for a palliative care consultation should I become unable to make my own decisions, and have let my family know this.
I urge everyone else I know to do the same, in case you are ever unable to make your own decisions. This consultation can provide the individualized, expert medical care needed and help prevent people getting to a place where they feel assistance with dying early is their best option.
Jeanne Martinez RN, MPH, CHPN, FPCN