When I was the Director of Social Services at a nursing home, many of our patients were severely ill. They suffered from terminal conditions and were not expected to improve with time. Others had bodies that were simply giving out, the natural result of living long and full lives. Many times, they and their families were called upon to make tough end-of-life decisions so that their passing could be reasonably peaceful. Hospice is often a valuable resource in situations like these1, as it offers comfort and guidance at a very difficult time.
However, the owner of the nursing home didn’t allow hospice visits because they interfered with his religious beliefs. While he was certainly entitled to those beliefs and to follow his own set of values, our client base at the facility was diverse. Many did not share the owner’s faith, and as long as they stayed there they were prevented from making key choices in their health care. I’ll be honest: if I were still the Director of Social Services and a patient or family asked me what I thought they should do in that situation, I’d look into transferring them. There were many other facilities where they could have had more freedom and autonomy.
This scenario is similar to what is happening all over the country today to those with terminal illnesses. Often, they have specific wishes they want to be carried out, but it may be their doctor—not a nursing home—who refuses to entertain them.
Why Medical Professionals Have Strong Feelings about End-of-Life Decisions
It’s no surprise that doctors and other healthcare workers often have strong feelings about death and the circumstances surrounding them. Most went into healing professions to save and help people, not to do anything that might harm them or cause them to pass away prematurely. And in most cases, this is a very noble and healthy attitude to have.
Unfortunately, there are circumstances in which this is not possible. Some individuals’ illnesses are too severe, or too far gone to make further healing possible. Oftentimes, the best option in these cases is to limit the amount of physical and emotional pain the person suffers before nature takes its course. But for doctors who see the death of their patients as a personal or professional failure2, they simply aren’t willing to entertain or accept the idea.
Making End-of-Life Decisions On Your Own
There are certain individuals for whom it’s time to make end-of-life decisions, and certain ones that need other types of care. For instance, deciding to forego medical treatment and end their lives early may be a symptom of depression, not terminal illness. Often, older adults who are homebound become isolated, lonely, and may begin to feel hopeless. They would be better served by a depression screening, and possible increased connection with the community and their loved ones.
But for those that are ready, assigning health care proxies, filling out advanced directives, procuring Do Not Resuscitate (DNR) orders, and acquiring hospice service are all logical steps. It’s even possible to have hospice at home, but a doctor’s order is required. Hospice involves palliative (comfort) treatment only. No further curative treatment can be received once the patient enters hospice, and this is the part doctors are so often conflicted about.
Make the End-of-Life Decisions You Want
End-of-life decisions are one of the mainstays of an older adult’s dignity and autonomy. If you or a loved one have strong feelings about the type of care you want—or don’t want—regarding terminal diagnosis, you have every right to them. Don’t be afraid to seek out a doctor or other healthcare provider who will respect your wishes—and make sure they’re carried out. Much like my example above of transferring patients to a new nursing home, sometimes you have to make big changes in order to secure your future. After all, it’s your life, and that includes every possible phase of it.
If you are unsure of how to best help an aging loved one, the trained and compassionate staff at the Institute on Aging is here to help you make that decision and gain the best in at-home care for older adults. Contact us to find out more.