When Marilyn, age 69, was diagnosed with terminal liver cancer, she made the decision after several months of chemotherapy and its miserable side effects to stop all treatment. Her family members, especially her daughter, were upset but could understand Marilyn’s reasoning. Chemotherapy had not stopped the progression of the disease but it had certainly decreased her quality of life. Marilyn wanted to spend whatever time she had left with her family and getting her affairs in order. It was a relief to her when her oncologist gently suggested that she consider hospice care at home.
Although hospice services are expanding in the United States, there are common misunderstandings about what hospice care involves and how it is different from palliative care. Families often wonder if hospice has to be provided in a specific place and if it means that they are “giving up” on their loved one. In reality, hospice is a form of end-of-life care and can be provided at the person’s home, a hospital, an assisted living or nursing home facility, or at a hospice center. Hospice is appropriate when a person will no longer benefit from curative treatment and life expectancy is approximately six months.
An interdisciplinary hospice team, which often includes a nurse, social worker, chaplain, and volunteers, assist the patient and his/her caregiver(s) and family by:
- Managing pain and other symptoms to allow the patient the best quality of life possible
- Offering emotional and spiritual support and respite care when needed
- Providing medications, medical supplies and equipment and other services
- Educating the caregiver and family on how to take care of the patient
- 24/7 telephone access
- Coordinating care with other healthcare providers to avoid unnecessary hospitalizations and unwanted medical interventions
- Guiding the family through the end-of-life process and offering bereavement support after the person has passed
While the goals of hospice and palliative care are to provide pain and stress relief, there are important differences between the two. Palliative care is usually provided in a hospital setting and can occur the same time as curative treatments, and at any stage of a disease. Hospice, on the other hand, excludes curative treatment and is designed for people with a prognosis of 6 months or less.
Dealing with a terminal illness is often very stressful and difficult, not just for the patient but for the entire family. Hospice, with its emphasis on compassionate, holistic care, emotional support and respect for the person’s wishes, gives the individual and his/her family control over what services they want and need to receive and the ability to make end-of-life decisions that make the most sense for them.
