Published: November 16, 2008 11:01 pm      

The value of Hospice

National Hospice Month observed locally

By Michelle Erisman

Special to the Daily Sun



The philosophy of hospice is not to prolong life, nor to hasten death. Hospice addresses comfort and symptom needs, and provides holistic support to individuals and their families.

The Reality

Every year, more and more Americans receive hospice care during their end of life. But there are still many who die without the support of hospice care. And unfortunately, most people will die as a result of a chronic illness. According to the largest multi-state study on end of life care, authors report “woefully inadequate care for both dying persons and their families.” Many people die in pain, have poor communication with their physicians during end of life, receive poor emotional support, and poor respect. (Journal of the American Medical Association, Jan 7, 2004). Many are admitted to hospice late, which increases the risk of the individual and their family experiencing physical and/or emotional crisis during the end.

The Hope

Hospice strives to provide a better end of life journey. When six months or less prognosis is expected, and curative treatment is not available, hospice focuses on treatment for quality of life, pain and symptom management. An individual and their family can better experience the full scope of services and receive better pain and symptom management the longer hospice is involved.

Years ago, physicians made treatment decisions without input from patients or families. Patients are now given choices and are actively involved in treatment decisions. However, in order to make an informed decision, a person/family needs to be informed of the prognosis. One should also ask, “What is the course of the illness expected with and without treatment?” The benefits of treatment should be weighed against burdens of treatment. Future quality of life with and without treatment should be discussed.

There are many difficult treatment decisions to be made, such as: artificial nutrition and hydration, CPR or Do Not Resuscitate, treatments such as chemo, radiation, dialysis, blood transfusions, or hospitalizations. Specific Advance Directives should be in place, and are important so that family, POAs, and health-care professionals know what the wishes are of an individual who is both terminal and unable to communicate their wishes. Adding specific wishes, such as no artificial nutrition and hydration relieve family of the guilt and burden of making these difficult decisions. While many families admit that the decision to elect hospice is difficult, they often wish they elected hospice services sooner.

Is hospice only for cancer?

No. Hospice can provide compassionate support to anyone facing any end stage illness including: heart disease, liver disease, kidney disease, HIV/AIDS, debility or failure to thrive, neurological disease such as dementia, Alzheimer’s, Parkinson’s, ALS, stroke, and any life limiting disease or accident.

General signs of decline that may indicate end stages of an illness may include: significant decline in overall activity, frequent ER and hospitalization visits, frequent infections, severe bed sores, increased difficulty swallowing, uncontrolled symptoms despite treatment, and shortness of breath or severe swelling despite medications and oxygen.

When should hospice be called?

Hospice should be called as early as possible, so that the full scope of services can provide the much needed support and allow for a more peaceful, better ending.

Despite the myth that when hospice is started that death will be hastened, a recent study shows the contrary, that hospice and good pain management are associated with longer survival times for certain illnesses.

What hospice services are provided?

Intermittent services provided by the hospice team are: nurses, CNAs (aides), chaplains, social workers, and volunteers. Routine hospice care is intermittent, but available 24 hours a day for emergencies.

Hospice provides four different levels of care, medications, supplies, and equipment related to the end stage condition, and is covered at 100 percent under the Hospice Medicare and Medicaid benefits. Many managed care insurances have hospice benefits. Coverage is based on individual plans.

Where is hospice care provided?

Hospice commonly provides care in the home setting, in nursing home settings, and assisted living facilities.

Talk to your doctor.

Ask about hospice. Ask about your condition and prognosis. You can then make informed decisions on how to spend remaining time and live the kind of life you want.

“In the end, it’s not about the years in your life that count; It’s about the life in your years.” — Abraham Lincoln

—————

Michelle Erisman, RN, BSN, is a Family First Hospice liaison