Help your clients ensure their end-of-life wishes are met

Act now to avoid difficult, costly dilemmas

You might not encounter an end-of-life issue as dramatic as the recent Terri Schiavo case, which pitted the husband against the parents and prompted a special law passed by the Florida state legislature.

But regardless of your practice setting, you are likely to encounter critically or chronically ill patients whose last days may be complicated by the fact that they haven’t let anyone know their wishes for end-of-life care.

That’s why case managers should make conversation about advance directives part of every case they are working on, regardless of what is going on or what diagnosis the patient has and not wait until the patient is in a life-or-death situation.

"I feel that these conversations should be a routine part of a case management assessment and integrated into our health care culture as a whole," says Catherine Mullahy, RN, CRRN, CCM, president of Options Unlimited, a Huntington, NY, case management company. "Death is not an option, even though most Americans choose to ignore the natural human process that will profoundly affect them and their families."

Case managers typically deal with people with multiple conditions who could run the risk of being in the same position as Terri Schiavo, points out Judith Black, MD, senior products medical director for Highmark Blue Cross and Blue Shield in Pittsburgh.

Through an advance care initiative begun in 2000, Highmark Blue Cross and Blue Shield case managers take the lead in bringing up end-of-life planning in their discussions with members.

"For a case manager to be effective in helping families avoid what is going on with the Terri Schiavo case, they need to learn a lot of communication skills so when they have the conversation with the patient and their family, they can ask the right questions," she says.

One scenario a case manager may encounter could be an individual with advanced Alzheimer’s disease who is not eating. The case manager or physician approaches the family about a feeding tube. If the older adult hasn’t talked to anyone about his or her wishes, the family members could be divided on the issue.

"What we try to do is encourage all members to talk to their family and loved ones about what they would want if they couldn’t make a decision and to identify one person who would step in for them," Black says.

If a patient already is in the hospital and the case manager is asked to talk to the family about what their wishes are, it’s probably too late to help the family avoid a lot of heartache, says Michael J. Demoratz, PhD, LCSW, CCM, a case manager in private practice who specializes in care for catastrophically ill patients.

"When a loved one is in the hospital, it’s probably the worst time for people to make a decision about what they want. They aren’t thinking clearly, and any decision is covered with emotional overtones," he adds.

In those cases, if the family makes the decision not to do something, the patient is likely to die. If they make the decision to do something medically, the patient may suffer, Demoratz says.

Asking people with end-stage emphysema if they want to be on a ventilator to help them breathe when they already feel like they are suffocating may not be the time to address it, he notes.

On the other hand, if the issue is covered well in advance, a patient could direct to have treatment options that would alleviate the experience of suffocation and allow for a more peaceful, dignified death, if that is his or her wish, Demoratz adds.

In the Schiavo case, there is nothing in writing, so there is no way the health care providers can know what her feelings are, Demoratz points out.

"It’s one thing if a patient has made the decision clear, but in the case of Terri Schiavo, there is nothing you could say to the parents to convince them that was true. We need to be very cautious of going down the path of removing the feeding tube of a patient who hasn’t made his or her wishes clear," he says.

Through the years, Demoratz has worked with a number of patients who were in a similar state of health as Schiavo’s and, in some cases, the parents were fighting the spouse about what should happen.

"If the patient has something in writing, I am adamant in supporting their wishes. It’s making the decision in light of not knowing where we get into trouble," he says.

The Patient’s Self Determination Act of 1990 requires health care facilities to provide written information to patients about their right to refuse treatment and the right to create advance directives for health care.

In a typical scenario, a patient receives information about advance directives and the right to refuse treatment when he or she is being admitted to the hospital, and treatment issues are given short shrift, Demoratz points out.

"The person who does it is a clerk. It’s the wrong time using the wrong person for the wrong reason. The discussion of a patient’s wishes regarding treatment is more than a five-minute presentation of a paper requiring a signature. It should be a well thought-out conversation by a physician who understands the requirement and has the time to devote to questions that arise, or if not the physician, a specifically trained health care professional," he adds.

Because case managers are in contact with patients, families, and provider teams on a regular basis, they have ample opportunities to bring up the subject with their clients.

"Case managers are perfectly positioned to be the leaders and advance guard in providing the much-needed education on end-of-life issues, not only to patients and families but also to fellow medical practitioners," Mullahy says.

Documents necessary for advanced care planning include advance directives, a written plan that lets health care providers know what kind of care the person wants, a health care power of attorney that designates a surrogate to make treatment decisions if the patient can’t make them, and a living will, an advance directive that goes into effect only if the patient has a terminal condition or a state of permanent unconsciousness.

The Physician Order and Life Sustaining Treatment (POLST) tool, developed by Oregon Health & Science University in Portland, is another tool that Black suggests case managers review as they talk to their clients.

The POLST form, designed for patients who have a serious health condition, asks a series of specific questions about care, including whether the patient wants resuscitation, medical interventions, antibiotics, or artificially administered fluids and nutrition.

The tool is intended to ensure that physician orders are followed when the seriously ill patient is transferred across care settings.

"It doesn’t replace an advance directive but facilitates the patient’s and family’s wishes being honored," Black says.

(For more information on the POLST, visit the web site: www.ohsu.edu/ethics.)