We can become numb by the relentless news cycle that can focus on the negative. But every once in a while, a brief sentence can change our lives.
“Jimmy Carter turns 99, about 7 months after entering hospice care.” Why should we care and what does this mean for each of us?
Let us turn back the clock several decades to a quote by Margaret Mead, an American anthropologist: “Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it is the only thing that ever has.” This is the story of someone who did change the world.
A Doctor Who Changed the Way We Die
A physician through tenacity and perseverance transformed medical management of patients at the end of life. Dame Cicely Saunders founded the first hospice. In London. It was 1967.
Dr. Saunders was a champion with tenacity for effective pain management and underscored that patients at end of life are in need of dignity, compassion, and respect as well as management of symptoms such as pain and shortness of breath.
This type of care was unheard of not that long ago. Today, hospice care is standard practice. In fact, it is a medical specialty, and I am the first board-certified physician in hospice and palliative care on the staff at Mayo Clinic.
From news reports, we know that President Carter has struggled with dementia in the setting of malignant melanoma (a deadly skin cancer), which according to the press has spread to his brain and liver. With the support of his family and trusted advisors, he transitioned from active medical interventions to a program of hospice and palliative care with a focus on management of symptoms and quality of life.
He and his wife, Rosalynn, at age 96 herself, made a rare public appearance at the Plains, Georgia, peanut festival. This was really not a festival about “peanuts “but a festival of life and prudent decision-making.
>>>Despite what you may think,
entering hospice care is not giving up or giving in to infirmity or disease.
It is a treatment plan as carefully executed as any medical intervention.
Here’s how hospice works.
Hospice care specifically focuses on a patient who has an expected survival of approximately six months. Whether it’s a serious cancer diagnosis or rapidly progressing dementia or some other life-ending condition, the guideline is life expectancy of six months.
Although the details may vary according to each state, in general if a healthcare provider certifies these criteria, the patient can be enrolled in hospice.
In contrast, palliative care focuses on medical care for people with a serious illness. The treatment plan is to provide relief from symptoms and stress of a serious illness. Palliative care can be provided for the patient at any point in the trajectory of an illness—not necessarily at end of life.
Palliative care and hospice care can be life affirming, providing support to help patients and families feel as well as possible regardless of the stage of the illness.
In the case of our former president and for each patient enrolled in hospice, there are discussions about goals of care. What are you most concerned about? As well as support and resources and management of symptoms.
Have That Conversation
Without clear conversations with patients and families about their end-of-life decisions, patients may be impaled on the healthcare clinical conveyor belt of multiple visits to the emergency room, needless interventions such as scans, and even surgery where the probability of any meaningful benefit is vanishingly low.
Without guidance on when to let nature take its course, how many of us have seen Grandma whisked away in ambulances, lying in hospital beds, undergoing painful procedures, languishing in rehab facilities, only to see no or little relief and certainly not quality of life?
With both hospice and palliative plans, patients in some circumstances can be cared for in their own home as in the case of President Carter. Or they may be enrolled in a facility with dedicated medical experts who have the insights and the judgment to manage medications for pain, shortness of breath, nausea, vomiting, and other misery.
A study by Dr. Jennifer Temel and colleagues looked the experience of a group of patients with far advanced lung cancer. Each received standard state-of-the-art medical management such as chemotherapy and radiation therapy and other interventions.
However, one group was enrolled in hospice and palliative care where experts addressed their symptoms with the goal to bring relief and better quality of life. The patients in the hospice-related program lived on average three months longer than individuals who do not have access to hospice services.
In contrast with the study participants who received standard care, those who received early palliative care had enhanced mood, more frequent documentation of resuscitation preferences, and less aggressive end-of-life care.
This is consistent with the former president’s experience where his unexpected survival is longer than originally anticipated. At end of life, as in life, he has been an inspiration for us all.
Bottom line
We as patients and we as family members need to take ownership. If there are symptoms that are not being addressed by the primary specialist, ask for a palliative care/hospice consultation. This medical specialty, thanks to Dr. Saunders, can provide comfort and relief.
Recognize that choosing hospice and palliative care is not “giving up” but is a segue, a gentle turn into another professional arena addressing the patient’s needs.
At every juncture in management, the palliative medicine/hospice team works in concert with the patient’s primary care physician as well as the other specialists involved in the patient’s care.
Each medical specialty has a tool box. The surgeon has the scalpel, the neurologist has the reflex hammer, the cardiologist has the stethoscope. The palliative medicine/hospice team has the tool box of listening and raising a crucial question that is often overlooked: “What are you most concerned about? What can we do for you to help you meet that goal?”
Image from Wix Media.