Empowering the Patient in Making End-of-Life Decisions

One of the fundamental precepts of hospice is that, as often as possible, the responsibility of making end-of-life decisions should be in the hands of the patient. Sometimes, however, that is easier said than done.

The barriers to patient self-determination can come in various forms. Often times, a patient’s family may be reluctant to discuss just how serious their loved one’s condition truly is.

“Sometimes family members are reluctant to accept the fact that a loved one is reaching end of life,” says Sherri Bickley, LMSW, M.Th., who heads emotional support services for Crossroads Hospice & Palliative Care. “Maybe they don’t want to believe that Grandma is really going to die; or they think it’s better to shield her from that reality.”

Explaining the reality of the situation.

Sherri notes that it’s often left to the family physician to deliver the bad news. But that too can be problematic. Patients and their families may be accustomed to letting the doctor make the medical decisions – or at least to tell them what they ought to do. But that doesn’t mean there is shared understanding among all concerned.

“Sometimes doctors may have a conversation with the patient or family about what is happening, but it’s not made clear that there are end-of-life decisions to be made,” Sherri says.

And while Medicare last year did begin paying for physicians to have end-of-life consultations with their patients, many still seem reluctant to engage in such conversations.

“The first thing we say when we come in for a hospice consult is ‘Tell me what your doctor has told you.’ It’s our job as hospice consultants is to give the patient and family the reality of the situation.”

Integral to that responsibility is ensuring that patients get as much support as they want and need, regardless of what end-of-life decisions they make in terms of treatment and care.

That can mean facilitating direct conversations among the doctor, patient, and family so that all information is clear and all questions are clarified.

Understanding the options.

The fact is that full self-determination really can’t happen unless patients are fully informed of their situation. Once patients understand their reality, then they can begin to discuss what their individual goals may be in terms of care – along with the options available to help them meet those goals.

“Part of our philosophy at Crossroads Hospice is that patients are their own best experts,” says Sherri. “That’s why it’s so important that they have all the necessary upfront information.”

Other issues can arise if a patient is physically incapable of communicating their desires or needs. That’s why it is important for people who may be reaching the end of their journey to take the time let their loved ones know their end-of-life decisions in the form of an advance health care directive, living will, or Durable Power of Attorney for Health Care. Their goal should be to document who should speak on their behalf regarding health care decisions and record specific instructions about end-of-life decisions and care.

“We often assist patients in filling out these forms,” says Sherri. “It’s part of our goal of helping patients be as informed and self-determined as possible in their end-of-life decisions.”

For more information on a patient’s end-of-life signs, visit the Crossroads website.

Recommended Reading:

Self-Determination: 5 Things People Want When They Die

Durable Power of Attorney: A Labor of Love

End-of-Life Care No Longer a Taboo Subject