The diagnoses of a terminal illness can send shock waves through not only the patient but the family as well. No one is spared. Bewilderment, fear and a sense of loss may wash over all involved.

“Many of my patients face tremendous fear that their disease is going to do something terrible to them,” said Nurse Jan Pilotte and palliative care coordinator at Eastern Maine Medical Center. “I can’t tell you the number of people who have said to me, ‘I don’t know what to expect when the time comes.’ I tell them that we can’t cure their disease, but we can surely make them more comfortable. They do not have to worry about dying in severe pain or fear suffering in some other way.”

Palliative care treats the symptoms of terminal diseases, said Pilotte. While this is not to say there will be no curative treatment, at some point the usefulness of these treatments will cease.

Palliative care should not be confused with hospice, she added. The approach of treating symptoms and improving quality of life are shared goals. However, palliative care is not limited to treating patients with six months or less to live, as does hospice care.

“The patient and the family are treated as a whole unit,” said Pilotte. “Palliative care can start around the time of diagnosis of an incurable illness or life-threatening condition. Some people can live for years with diseases that are considered end-stage, such as emphysema, but it’s usually when the disease has progressed and curative treatments are no longer as effective that palliative care is implemented.”

For example, if an emphysema patient is hospitalized repeatedly in a brief period of time, someone may ask the all-important question, “Is this how you want to spend your time?” At this point, depending on the patient’s answer, the primary care physician will make a referral and palliative care will be instituted.

This shift in focus from curative to palliative involves making the patient comfortable, which provides quality time for the remainder of life, said Pilotte.

“Our staff tells patients that we can offer them aggressive palliative care, which involves careful attention to improving symptoms such as pain, shortness of breath and nausea to name a few,” she said. “Also addressed are their spiritual, emotional and social needs.”

As the patient learns to cope with end-of-life issues, so must the family. Anxiety and stress are constant companions as thoughts of “going on” alone, without the loved one is ever present.

The palliative care nurses spend considerable time with the patients and the families, in an effort to determine any needs that should be addressed. It is often a matter of simply sitting with them and offering an open ear.

“As we listen, we provide support to help them as they move through the difficult issues often faced when dying is imminent,” said Pilotte. “How the family is doing is important because they too are affected by the illness. The family is a critical support system for the patient. To that end, palliative care provides a supportive presence to help people begin to express their worries.”

Any way you look at it, dying from a terminal illness is never easy. The best that can be hoped for is a relatively pain free and peaceful, dignified ending. That is the crux of palliative care.

“Our goal is to provide support to patients and families as they begin to address concerns about end of life,” said Pilotte. “The program at EMMC is all about helping health care professionals, families and patients to better understand that a ‘good death’ can be accomplished through education and continued commitment to helping people to die without suffering.”

Carol Higgins is communications director for Eastern Agency on Agency. For information on EAA, call 941-2865 or log on www.eaaa.org.