End-of-Life Care: Talking About Death and Dying

The use of ‘comfort care’ in news announcements about Barbara Bush’s declining health before her recent death highlighted the choices faced by those chronically ill — and sparked some confusion about end-of-life medical care.

“Barbara Bush is a wonderful example of someone being responsible and informed, and understanding the options available to help make important healthcare decisions before end-of-life,” said Ana Viamonte Ros, M.D., medical director of palliative care and bioethics at Baptist Health South Florida. “This was a personal decision that she didn’t have to share publicly, but hopefully it will encourage others to think and talk about their choices and then document them so their choices are honored.

Although most Americans believe they should talk about end-of-life treatment options with a doctor  – about nine in 10 (89 percent) – only 17 percent say they’ve actually had such a discussion,  including 27 percent of people over the age of 65, according to a poll conducted by the Kaiser Family Foundation.

Comfort Care is a Stage of Palliative Care

Comfort care is not abandonment or giving up. On the contrary, it’s about making sure the person is well cared for during the last stage of their life.

“Palliative care is a level of comfort care that can begin the moment any type of serious illness is diagnosed,” Dr. Viamonte Ros said. “One of the biggest misconceptions is palliative, or comfort care, stops care. On the contrary, it enhances care.”

Research has shown that when doctors are able to manage pain in people with chronic illnesses they live longer, she adds. With a serious illness or chronic condition comes symptoms that need to be managed. The palliative care team, composed of doctors, nurses, licensed clinical social workers, faith leaders and other caregivers, addresses how to manage the symptoms based on the illness, treatment options and patient’s wishes.

Among the conditions with which palliative care is most commonly used are cancer, heart disease, pulmonary disease and kidney disease.

There are a number of things that you may want to discuss with your loved ones. From major points like who should be designated to make health-care decisions if you are incapacitated, or how you want pain to be controlled. Specific choices can also be outlined. They may include decisions such as if you want to receive a blood transfusion if bleeding or have your pet on your bed with you.

The palliative care team also takes into consideration a person’s spiritual beliefs, cultural influences and goals in life. The goal of treatment is to improve the quality of life for both the patient and the family.

“Palliative is not an ‘all or nothing’ type of care. Rather, a person’s palliative care plan is provided at different levels based on stratification of the patient, can be very specific and change as patient’s condition changes.” Dr. Viamonte Ros says. “When palliative care is instituted, it humanely allows families to move down the list as they see a family member move into different stages of illness or end-of-life.”

Advance Directives to Communicate Choices

When these choices are put into writing and given to a medical team, they are called advance directives.

Included in advance directives is usually designation of a healthcare surrogate – someone you trust to help guide doctors. Another type of advance directive is known as a living will.  It’s a legal document that directs the healthcare professionals caring for you in case you are unable to make decisions or communicate wishes yourself.

Having a healthcare surrogate is important at any time, not necessarily just at end-of-life, Dr. Viamonte Ros says. And your healthcare surrogate may not be the closest person to you. It should be someone who will honor your wishes and be able to think clearly when faced with having to make decisions on your behalf, she said.

“End-of-life is an emotionally charged situation – for the person nearing death and their family and friends. Advance directives help everyone get mentally prepared ahead of time, so that when time is critical, decisions can be made with clear thinking, Dr. Viamonte Ros adds.

End-of-life Care

One of the last stages of palliative care is referred to as ‘comfort care.’ The goal is to keep the person as pain-free as possible, avoid struggling and taking no extraordinary measures.

“The phrase ‘comfort care’ can create confusion by suggesting that it entails stopping medical treatment,” Dr. Viamonte Ros says. “Instead, it focuses on managing a patient’s symptoms to keep them comfortable and retain their dignity. Their physical needs and comfort, as well as their emotional and spiritual needs, are the priority.”

Hospice care is reserved for people who are expected to live six months or less. This level of care focuses on making the person and their family comfortable, providing pain relief, spiritual care and other support as needed.

Talking with your loved ones openly and honestly about your wishes for end-of-life care can be one of the most important things that you will do for your family, Dr. Viamonte Ros says. “Your loved ones will have a shared understanding of your preferences and will feel better knowing what decisions you would want.”

“Being proactive about end-of-life decisions allows you to take responsibility and make decisions for yourself beforehand, so you can be at peace,” she adds.