Advanced Care Directives
Many Americans approach the subject of death and dying precariously, or do not approach it at all!
It's almost as if they believe that "we may get out of life alive". Doctors often share this cultural discomfort and have difficulty talking to patients appropriately.
As a Registered Nurse for over 40 years, I've seen how much more difficult a death is when loved ones do not know the dying person's wishes. It is shocking how often this happens in our culture.
The oldest patient I ever saw that had no plan--no Health Care Proxy identified--was 102! A common theme we hear in these cases, is “you’ll know what to do when the times comes”.
But is that true with our complex medical system of endless interventions, held out like an a-la-carte menu?
The end of our lives can be so much more meaningful if, like our whole life, we have made choices according to our own personal wishes.
Below are some helpful tools to help you learn about end-of-life choices for you and your loved ones.
Hospice vs. Palliative Care
These services are usually underutilized and brought in very late in the process of a dying person’s journey. There are many myths surrounding these services and a stigma can exist, particularly around Hospice, making patients reluctant to start these services "too early."
Yet most people that have had a loved one in Hospice care praise the services highly and often wish they had sought these services earlier in their loved one's journey.
Both Hospice and Palliative Care help manage the person’s symptoms (pain, anxiety, fear, delirium) with a terminal diagnosis such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, or Parkinson’s disease.
Both can take place in a number of settings: home, assisted living, nursing homes, and hospitals.
Hospice is indicated when treatment is no longer curative and typically begins when a patient has 6 months or less to live. Palliative Care often precedes Hospice, bridging the patient from one service to another, and optimally not changing the care team.
As the goals of care move from comfort and active treatment to no longer curative, a patient may benefit from eliminating arduous trips to the hospital and assuming all care in the home.
There are criteria a patient must meet for 100% Medicare/Medicaid coverage for these services.
Helpful resources below:
Atul Gawande: a National Treasure
Atul Gawande, MD is a surgeon and public health researcher who currently serves on the Biden Covid Transition team. He is the author of the famed book Being Mortal: Medicine and What Matters in the End, which addresses our limited medical care for dying patients and their families.
Portions of the book can be viewed on PBS’ full film on Frontline. The New Yorker, where Gawande is a contributing writer, also has an abridged article on Being Mortal where Gawande reports on his mother’s episodes of sorely-lacking care, and illustrates the fragmented way in which we care for elders in the United States
Doctors also struggle with the crisis posed by a dying patient. They must address the needs of the dying person, as well as and their circle of friends and family, with a medical system that does not support the process of dying.
Dr. Gawande promotes that physicians ASK (what the patient already knows, and what they want to know), TELL (the patient the disease trajectory and what he/she can expect without treatment and with treatment, also what those treatments will entail), then ASK AGAIN (what the patient has absorbed/understood).
Dr. Gawande recognizes that seriously ill people have more at stake than just prolonging their life. He wants patients to be able to articulate and honor their own priorities--continuing to shape to the story of their life to the very end.