A Delicate Play: Hospice Care and Patient-Family Satisfaction

The Roman emperor Marcus Aurelius said, “the act of dying is also one of the acts of life.” His statement may go far in explaining why those involved with caring for the dying sometimes feel they are participating in a highly charged theatrical production.

Hospice care, and healthcare in general, seems to fit the image of a “play.” One can picture the staff as the stage crew responsible for lighting, props, cue cards, and other elements required for the performance. The person who is sick or dying plays the lead, while his or her family provides supporting roles. Together, they produce a drama reflecting their values, tradition, and relationships.

If hospice care can be seen as a “drama,” how, then, does one evaluate whether a patient’s “final role” was a success? What criteria should one use to determine if he or she experienced a “good death?” What of the family’s experience? In an attempt to answer these and other questions, we need to understand the unique hospice commitment of helping individuals and their families deal with death and dying.

Hospice care focuses on the whole person with special attention paid to the emotional, psychological, and spiritual needs of both the patient and family. This family-centered care strategy is at the core of their service. Given the complexity arising from such a strategy, what are the outcome measures that can help the team provide the most effective care in the most efficient manner? Do these measures define the value of hospice services for both the patient and the family?

As in any healthcare setting, the measures must be based on patient goals. The National Hospice Organization (NHO) defines three goals for end-of-life care. They are:

1. Self-determined life closure – a good indicator for self-determined life closure is the patient’s chart showing conversations about advance directives, notes from social worker, clergy, nursing, etc., with death seen not as a scourge or punishment, but as the culmination and fulfillment of life.
2. Safe and comfortable dying – safe and comfortable dying involves managing pain. Symptom severity is evaluated by the Pain Scale (0-10), which is recommended by the World Health Organization. A defined pain protocol should alleviate extra visits for pain management. (Caring for a person who is dying involves seeing him or her in the light of their personal history, family, cultural beliefs, and the meaning they attribute to their life. To alleviate “suffering” means going beyond the management of physical pain to address the human need for communication, recognition, and compassion surrounding the conflicts, losses, and loneliness involved in the process of dying.)
3. Effective grieving – there is no definite point in time that signals the completion of the grieving process, instead, a return of physical energy, old roles relinquished and new ones established is the beginning. Every time one enjoys a peaceful nights rest and can talk about a loss with a feeling of control and ease, means that a new, positive phase is beginning. (Hospice usually provides bereavement counseling for a year after a loss.)

Nearly all of the above factors are measurable and correlate with effective hospice care. In addition, some organizations such as Hospice by the Sea send a Family Satisfaction Survey to family members three months after the loved one’s death, which, upon its return, provides additional information to hospice about that family’s experience.

Few families and few people have adequate support when they need it. In Braided Lives, Marge Piercy reminded us that in difficult times “we need goodwill far more than we have ever earned.” By forming a circle of support around a patient and their family, Hospice plays an important role in creating opportunities for “goodwill” among staff, patient, and family.

While we cannot take away an illness and the distress that it brings, we can be with people as they face the difficulties and uncertainties associated with dying. The hospice process of “journeying with someone to the end” seldom fails to impress everyone involved with its power and its sacredness. By striving to make every individual’s final act worthy of a curtain call, hospices are “centers of excellence” for end-of-life care.