The recent statement from the family of President Jimmy Carter opens the door for a crucial conversation about end-of-life decisions for us all.
The news release stated that President Carter was now transitioning from the traditional hospital-based medical model to a hospice program where he will remain at home surrounded by his loving family and associates. After series of short hospital stays, the release said, Carter “decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”
Why is this important and why do we need to know about this life-affirming option?
Palliative care is a specialized medical program for individuals with a serious medical condition. The purpose of this care is to provide relief of symptoms and there is a key goal: enhance quality of life for both the patient and the family. Hospice is just one part of the larger picture called palliative care.
I was the first Mayo Clinic doctor board certified in palliative care and hospice. I developed with the input and guidance of other colleagues the curriculum in this specialty for the Mayo Clinic Medical School, and I practiced this type of care during my forty-winter career at the Mayo Clinic with more than 40,000 patient encounters.
And I wrote a book about choices and the end of life called Farewell: Vital End-of-Life Questions with Candid Answers.
Fair to say, I have an expertise in this area.
A Reasonable and Appropriate Option in Medical Care
When I say palliative and hospice care are specialties in medical practice, we who are practitioners are just as specialized in this area as an orthopedic surgeon is in replacing a knee or an ophthalmologist is in diseases of the eye. This is a recognized specialty area in medicine.
Hospice and palliative medicine are programs within the fabric of internal medicine and typically board certification would be based upon having a fundamental certification in internal medicine (like I do), family medicine, or a medicine subspecialty followed by one or two years of specialized training in hospice and palliative medicine.
Chances are you have not met a palliative specialist. Not yet. Maybe no one in your family was dying from pancreatic cancer, or Grandpa didn’t hang on for weeks and months in a hospital bed before leaving us. Maybe you never had a friend in an irreversible coma or a relative sinking into the depths of dementia.
Palliative care can be life enhancing in providing support to help the patient and the family have a high quality of life (if death is coming or not) regardless of the stage of the illness or injury.
The Role of the Palliative Care Team
I am not treating President Carter. I am not his doctor, but I would guess he and his family had a thoughtful conversation with their physicians. And I am betting they included other professionals on the palliative team such as nurses, social workers, psychologists, and dietitians, as well as physical and occupational therapists.
Because the former president is such a religious man, I assume their faith leaders were part of the conversations too.
The concern is that President Carter is ninety-eight years old. His health is failing. And I understand he had some recent hospitalizations for unspecified conditions.
At some point, the patient and the family stop and decide whether calling 9-1-1 for yet another ambulance ride to the ER for some patching up is the right course. A fall, a cough, a fever, pain—all these conditions would send any ninety-eight-year-old to the hospital. In this case, the former president’s health now comes secondary to his quality of life in these final days, weeks, months—no one ever knows.
That’s when the palliative team steps in to do their magic.
Patients are typically referred to palliative care to address the goals and concerns of the patient and the family, offer support and resources needed (examples would be oxygen or help with bathing or medications) as well as management of symptoms such as pain, shortness of breath, and loss of appetite or weight.
Referral to a palliative specialist does not mean anyone is giving up or stopping treatment. Not at all. No one is sending the patient home to die because nothing more can be done.
Palliative care addresses the needs of patients with a chronic serious medical condition that impacts upon their life (someone in a serious car accident may be healing but need palliative pain management and tons of rehab). This is not end of life.
Hospice care (a form of palliative care) addresses the needs of patients with a life-limiting condition as a disease (even the natural disease of aging) runs its natural course and would pass away within approximately six months. Doctors can make this type of assessment. Although we don’t play God, we have experience in signs of end of life.
The Natural Progression of Disease
As in the case of the former president, many patients have an agonizing trajectory where they bounce back and forth between the nursing home, their own home, and the emergency room. No one is really satisfied with this approach, and this led to the evolution of palliative care, which can be given on an outpatient basis, in the patient’s home with home visits by specialists, or in a long-term care facility.
These programs focus on managing symptoms that emerge in the context of serious medical conditions. Under the direction of these professionals, patients can reduce hospitalizations, which can be profoundly disruptive to the patient and the family.
A physician is typically in charge of a hospice and palliative care program and works with a team of healthcare providers and everyone interfaces with the patient’s primary care team and obviously with the patient and the family.
Any curative medical treatments such as chemotherapy would be ceased. Regular medications that provide for quality of life are continued or given. Pain levels are assessed and medicated for comfort. CPR would not be given should the patient experience cardiac arrest. That would defeat the purpose of allowing nature to take its natural course with the disease or aging process.
As we know, the former president is said to be surrounded by his loving and large family--the best medicine money can't buy.
Helping the Patient and Family Make Agonizing Decisions
The palliative care and hospice team are also experts in addressing the complicated and sometimes anguishing decision about advance directives. If discussion of end of life has never taken place or been documented legally, the family finds itself lost at sea, with disagreement and rancor, finger pointing and anguish.
If Mom is unable to tell them, everyone asks, “What would Mom really want at this point?” Without earlier guidance from Mom, no one knows.
Here is the first question often discussed with the patient and family: Who do you want to speak for you if you cannot speak for yourself? Who understands your values and who do you trust to represent you if you cannot communicate?
The second question is this: What level of care do you want? Do you want life to be sustained at all costs requiring a breathing tube, machines to maintain kidney function, and an armada of medications to maintain blood pressure and other functioning?
You make your wishes known through legal documents (sometimes called living wills and designating a healthcare power of attorney for decision-making). It’s best to address these questions while you are not ill, well before you may ever need this type of care.
In family discussions about palliative care, I would often ask: If you were sick, what would be most important to you?
To live as long as possible even if you think you will have poor quality of life?
To try treatments for a period of time, but stop if you are suffering?
To focus on quality of life and comfort, even if your life is shorter?
The illness of the former president can open the door for us to process these very difficult decisions. It is far better to address and clarify our concerns during the light of day surrounded by family and friends in alignment with our wishes rather than under the harsh blue light of a monitor in an emergency room at three in the morning.
If you do not decide, someone decides for you, and those decisions may not be the decisions that you would make for yourself.
We wish the Carter family and all patients and families on this journey grace and peace during these final days.
Image from Shutterstock.