Before passing last week, former first lady Barbara Bush announced she would spend her final days at home with her family using “comfort care” in lieu of continued medical treatment for her congestive heart failure and chronic obstructive pulmonary disease. This means she chose treatment to provide her comfort instead of pursuing further treatment for a cure.
This is no surprise to those who knew Mrs. Bush and worked with her over the years, as she was an early champion of hospice programs for the terminally ill. Specifically, between Congress and the White House, she made a splash in the media more than once due to her visits at the Washington Home for chronically ill patients, where she assisted in founding the hospice program, and her 1989 photograph holding a baby with AIDS.
At the time, the height of the AIDS epidemic, it was taboo for the first lady to hug terminally ill individuals with the virus. But being the woman she was, Mrs. Bush was more concerned with comforting a crying child than media perception, and was later credited for changing the public perception of HIV/AIDS and terminal illness because of her actions.
Her decision decades later to begin comfort care at home—otherwise known as palliative care—also deeply resonated with families across the United Sates caring for their loved ones who are suffering with either long-term or terminal illnesses. Many have to make difficult decisions with other family members, about their finances, and who gets the final say concerning quantity of life versus quality of life. In a world where we will do everything possible for a few extra hours, the question of “should we?” can be extraordinarily hard for some to grapple with.
Is It Wise to Delay Nature’s Natural Course?
Thus, these conversations, albeit some of the most important they will ever have, are extremely difficult for most families, often leading to conflict amongst relatives, as well as costly for kin and taxpayers. That is a shame, given how much is spent on life-extending options that regularly lead to more suffering and inevitable heartache. Bush chose, in the end, to forgo those additional life-extending treatments for quality time with her family.
This is consistent with what most doctors in the U.S. would choose to do in a similar situation. In fact, when asked about their own end-of-life choices, almost 90 percent of doctors surveyed said they would not seek many life-extending options they perform for others every day given how much quality is sacrificed for a few extra days.
Further, in 2009, it was found the Medicare system alone paid $55 billion for doctor and hospital bills incurred during the last two months of patients’ lives. The numbers climb each day due to our aging population. This is not to advocate for cutting necessary goods and services that provide care for our dying, but to highlight the importance of helping those we love make rational choices for how they want to spend their final days.
Let’s Make the Options Clear
After Bush’s passing on Tuesday, much attention is being paid to end-of-life care options, and much debate and uncertainty around what is best for those we love. It has also sparked invaluable reflection and conversation about what we, as individuals, want for ourselves as we age and what society can afford.
But this has also led to much confusion by the various phrases being used, like comfort care, compassionate care, palliative care, and hospice care. It can be unclear, certainly for family members trying to understand timing, location, payment, and eligibility for services for illness and prognosis. Therefore, it is important to first know that palliative care is comfort care. Further, palliative care is included in hospice care, and both can be instrumental in providing the pain management, as well as the emotional and spiritual support, so many patients and their loved ones need.
There are many similarities in the care plans. Specifically, palliative care is “focused on providing relief from symptoms and stress of serious illness. The goal is to improve quality of life for both patients and the family.” This means a team of specially trained doctors, nurses, and specialists work with the patient’s doctors to provide an extra layer of support.
This can be appropriate at any stage of a serious illness or age. It can also be provided alongside curative treatment if the patient chooses. However, palliative care is often paid for by the individual patient or loved ones, costing private insurance more, but often saving significant hospital costs.
Hospice care, on the other hand, provides palliative care, but is exclusively employed within the last six months of life or less. After two physicians certify that the patient has less than six months to live if the disease follows its usual course, Medicare, Medicaid, and private insurance pay 100 percent of the hospice costs.
In fact, it is the only Medicare benefit that includes pharmaceuticals, medical equipment, 24/7 access to care, nursing, social services, chaplain visits, and grief support following a death. As can be imagined, this is an exorbitant financial burden on the health system, except when compared to providing the same level of services at the end of life inside a hospital.
Bush sought treatment for her congestive heart failure and COPD for an extended period before deciding with her care team and family that curative treatment was no longer an option. By using palliative care, she helped keep her family at the center of her health decision.
It is rumored that Mrs. Bush was laughing with family and friends and enjoyed a glass of bourbon on her last day. She passed away in her home on Tuesday, April 17, surrounded by her family. The funeral for Mrs. Bush was Saturday in Houston, Texas.