Caring for Terminally Ill Starts with a Talk

What is it about our society that we can’t seem to talk about end-of-life care? With more than a decade’s experience as a professional serving the hospice industry, I am continually struck by the lack of dialogue about how to care for the terminally ill. Just recently, I saw a letter to the editor in USA Today about an article on palliative care. “Sounds to me like it is a vague system set up by insurance companies to shunt people off into a system that keeps them occupied instead of seeking expensive medical care that costs the insurance companies a lot of money,” the reader wrote.

Even our national government is clueless about the importance of planning for life’s final days. At least twice in the past year, language has been removed from federal legislation that would pay for the time a provider spent with a patient talking about end-of-life alternatives. The language wasn’t dropped because it involved too much federal interference in the doctor-patient relationship or because it cost too much money; it was erased because we just can’t face this subject openly.

Those who suddenly find themselves in the surrogate role, having to make hard decisions about a loved one who is no longer able to participate in the discussion, don’t care about the politics that prevent them from talking about this subject. They just wish they could start the process again, only this time with a plan and perhaps some advance directives in hand.

Two friends of mine whose loved ones dealt with terminal illnesses recently further illustrate the problem.

One, my friend’s father, was taken by ambulance to the hospital on what turned out to be the day before his death. His health had been compromised for some time, and he was not in any specific interventional treatment, so I was somewhat surprised to hear that seemingly no one had talked to the family about the choices they might make. I say seemingly because it is only my opinion that the family would not have knowingly chosen the ICU for their final 24 hours with their loved one if they had known about alternatives such as hospice care. In the second case, a middle-aged woman was fighting ovarian cancer; by the time she was discharged from the hospital and admitted to hospice, she never regained consciousness. Based on my experiences, I believe the family still benefited from hospice, simply not to the extent that both the patient and family could have.

Hospice care addresses the physical, practical, emotional, social and spiritual needs of the patient, family and caregivers. Hospice care is appropriate when a patient has a terminal illness with a life expectancy of six months or less. And yet, the average length of stay on hospice can be as low as 14-20 days. While intellectually, all doctors know that the death of a patient facing advanced terminal illness is not a failure on their part, there is evidence that physicians could do a better job communicating with their patients about all of the end-of-life options.

That delay affects the perception of hospice. In 2005, the Journal of Pain and Symptom Management published a research report entitled, “Late Referral to Hospice and Bereaved Family Member Perception of Quality of End-of-Life Care.” That research found that “family members of persons referred too late (to hospice) reported lower satisfaction with hospice services, a higher rate of unmet needs for information about what to expect at time of death, lower confidence in participating in patient care at home, more concerns with coordination of care, and lower overall satisfaction. Families reported physicians as an important barrier to earlier hospice referral in nearly one-half of cases.”

What’s missing is counseling, with enough time to plan end-of-life care. Planning means that the patient’s voice can be heard. Planning allows for shared decision-making – understanding all of the alternatives, getting to hear the health care provider’s ideas, as well as family feedback on alternatives.

Planning allows for palliative care, allowing the patient to die with as little pain and as much comfort and dignity as possible, with hospice a strong possibility toward the end of that care process. Surrounded by loved ones, the patient can take advantage of what so many people have found to be the appropriate way to navigate life’s final days.