Acknowledging Death Can Relieve Patient's Anxiety

None of us wants to think about how we're going to die - with the possible exception of those who actually know their time is limited. Depending on the person, contemplating the end of one's life can produce a range of emotions - from shock and anger, to sadness and tears, to fear and dread or peacefulness, acceptance and gratitude.

Sandy Muchka, MS, RN, CS, CHPN, a clinical nurse specialist at the Palliative Care Service at the Medical College of Wisconsin, has seen the gamut of feelings faced by patients at the end of their lives - and similar emotions from their families or other loved ones. Her job is to help them focus on what's important to the patient in the time remaining - and understand that they can influence what happens, and when it happens.

"Often it's harder for families," she has found. "They experience many of the same emotions as the dying patient, plus the feeling of being left behind." As part of the core team of specialists at the Palliative Care Service, she offers patients comfort and relief from pain and other distressing symptoms, and helps families and their doctors make informed choices at the end of life.

The Palliative Care Service at Froedtert & The Medical College began in 1993 and has served as a national model ever since. In 2003, it was awarded a grant through the Center to Advance Palliative Care, becoming one of just six such programs to be designated a national Palliative Care Leadership Center. Its staff works with hospitals around the country, training physicians, nurses and other professionals in caring for patients at the end of their lives. The Palliative Care Service includes six inpatient beds offering intensive support for Froedtert patients and their families, along with a consultation service for patients throughout the hospital.

Quality of Life Is Paramount
When Muchka counsels patients and their loved ones, "I try to go in without an agenda," she says. "I try to find out where they are and what quality of life means for them."

The philosophy behind palliative care is similar in many ways to hospice care, she says - providing comfort, emphasizing quality of life, and working with patients and families at their homes, or in nursing homes or hospices. But there are a couple of key differences. In hospice care, the primary criterion is that a patient has six months or less to live, in the opinion of two physicians; and the care is eligible for Medicare coverage. The philosophy of palliative care is the same as hospice but with palliative care, patients do not need to have a prognosis of six months.

As a palliative care specialist, Muchka prefers to meet patients soon after they are diagnosed - and not necessarily at the end stage of their disease or condition. In reality, she and her colleagues are often not called in until death is imminent, which is not ideal. "You can't really establish a good relationship with patients and families in a few days," she says.

"I really like seeing people early in their disease, such as when they are starting chemotherapy and coping with pain or symptom-control issues." During these visits, Muchka and her colleagues discuss the importance of having living wills and advance directives to ensure that patient's wishes regarding end-of-life treatment are known and followed.

One of the major concepts of palliative care is providing a team approach to patients and families. The Palliative Care Service's core team consists of three doctors, three nurses and a psychologist. Other members of the interdisciplinary team include hospital social workers, case managers and chaplains.

Counseling Patients and Families
Depending on the case, she meets with the patient individually, with the family privately, and sometimes with both together. Or she may arrange a conference with the patient, the family and the doctors to discuss the patient's goals and discover if they are being met.

"We listen to their life stories and ask how we can help them reach whatever goals are important for them at this point in their lives. It could be pain relief or management of symptoms like breathlessness or nausea. We also talk about where they'd like to die; most say at home." For those patients, the staff arranges home-hospice care to help the family care for the patient at home.

"We try to get patients home whenever possible. But conflicts can arise when family members want their loved one at home. Sometimes the patient requires just too much care for the family to provide at home," Muchka says.

Other options for hospice care include placement in a residential hospice where 24-hour nursing care is available. For most patients, pain is the number one concern, followed by how long will they survive, worries about being a burden to their families, and a desire to stay at home. Family members generally express concerns about how much time remains, and above all, that their loved one is always comfortable.

Confronting Reality
In many cases, Muchka says, patients realize their days are limited. They might ask her: "How much time do I have left?" Usually, she'll answer with a question like: "Have your doctors talked to you about that?" Or, "What are your thoughts about that?" and she'll concur or disagree with their estimate of expected survival, depending on their symptoms.

"The most important thing is to be honest with patients," she says. In an article she co-authored for the January 2004 American Journal of Nursing titled "Acknowledging the 'Elephant': Speaking the Unspeakable When Death Is Imminent," she advises: "When cure is no longer possible, that fact must be conveyed clearly and, if possible, in person." (The article's authors also included Julie Griffie, RN, another clinical nurse specialist at Froedtert.) Sometimes, Muchka says, patients will say their doctor told them they had a year to live, but they doubt it will be that long. "What do you think?" they'll ask her. Often she'll say she agrees that it's likely to be a matter of weeks or months. "Or, I might say, 'The time is getting shorter.'"

One of the most common reasons for referral to the palliative care team is to assist in estimating prognosis. David E. Weissman, MD, Professor of Medicine at the Medical College and Director of the Palliative Care Service, frequently teaches physicians and other health care professionals how to frankly discuss the prognosis with patients. Muchka cited a recent study that found that physicians tended to overstate the survival period by a factor of 5 - that is, if a patient were expected to live no more than a few weeks or months, the physician might say it's six months to a year.

"Most patients know they are dying," Muchka says. "When it's confirmed, it's often a relief to have it out in the open." In some cases, patients know, but their families cannot talk about it, and that's frustrating. "One of our roles is to help families talk about these hard things."

Families from certain ethnic and cultural backgrounds may resist openly acknowledging questions of death. "We try to be sensitive to their cultural and spiritual concerns," Muchka says. "I'll ask open-ended questions. It's important to meet the patient where they are. It helps them make better decisions if we keep focused on the patient's goals and quality of life."

Those decisions might include whether to accept stronger medication to alleviate pain or depression, which may induce more sleeping; or accept a certain level of pain in exchange for a greater awareness of their surroundings. The latter might be the choice for a patient who is hoping to live long enough to experience a special event, like a wedding or graduation. Sometimes, Muchka says, if a patient is hoping to live through a holiday or celebration but the odds of survival aren't good, she and her colleagues might suggest the family move the event up. "It's a matter of finding a balance, and it's up to the patient and family to decide."

Barbara Abel
HealthLink Contributing Writer

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.