Home | Advocacy | DisAbility Awareness | Articles | Rare Diseases and Their Impact

DisAbility AWARENESS

Hospice - A Lesson in Living

By Michelle Sharratt     

Hospice is a service many do not understand. Webster’s gives a definition of “shelter for travelers, sick, and poor.” Hospice is the care of those terminally ill.

Questions:

1. Do people always die in Hospice care?
   No, some do “graduate” from Hospice care due to improvement in their illness.
2. Is Hospice only for people days from death?
   No, Hospice is a service for anyone with a life-limiting illness with a prognosis of 6 months or less.
3. Does everyone die in the 6 month period?
   No, some are in Hospice years, as long as they decline in health. Hospice covers all people from birth to 102 years of age. 
4. Who pays for Hospice?
   Medicare, Medicaid, and private insurance. Some Hospices are “for profit,” others are non-profit.

Hospice is a specialty of care for terminally ill people, not just those with cancer. It covers those with birth defects when the child is not expected to live a long normal life. It also covers those with heart disease, muscle diseases, kidney failure, adult failure to thrive, lung diseases like emphysema and COPD, liver failure/disease, Parkinson’s, strokes (CVA’s with severe damage), blood infections (like Sepsis), and all cancers.

Hospice care was started by Dame Cicely Saunders, who was a nursing student in England during WWII. Her observation of suffering and pain led her to believe three things that all patients need in life’s final journey: people need strong relief from pain (physical and mental); they need to preserve dignity and they help with psychological and spiritual pain of death. In 1967, she established St. Christopher’s Hospice in London.

As in the earliest Hospice to today, patients are cared for by nurses, social workers, spiritual counselors or chaplains, as well as medical doctors. In the mid 1970’s, Hospice care was introduced in the United States. It was the first organization to offer medical care in the patient’s home.

As a registered nurse of 30 years, my passion has become Hospice. I have worked in Hospice for more than ten years. During this time, I was one of the nurses who went into homes and gave patient care, taught families and friend “how to” care for their loved one. I’ve given thousands of hugs, wiped even more than thousands of tears, and sat quietly holding a hand of an afraid spouse, child, and patient, just after telling them, “We can’t fix this, we can only make you comfortable and pray for your needs.” At Hospice, I work with a great team of RN’s, LPN’s, LSW’s, Hospice Aides, Chaplains, Medical Directors, and Music, Massage and Art Therapists all available 24/7.

We are so blessed to start our day with a devotional and prayers from our Chaplain. We pray for strength to do God’s work with our patients and their families. Through my church, Sugarcreek United Methodist, I have had a sad but supportive privilege of caring for a couple of our members during their final life journey.

Hospice care revolves around symptom management – this is the center point of Hospice care. People who are in the process of dying deserve to be as comfortable as humanly possible. They also deserve spiritual care too. A dying person has a very difficult time with this process … people who have physical and spiritual pain have many symptoms out of control, once these are taken care of, they can pass quietly and without much pain.

One of the most important developments in expanding access to quality end-of-life care was the passage of the Medicare Hospice Benefit in 1982, through which hospices receive federal funds for the care they give to eligible patients. With this legislation, the federal government essentially declared that Hospice care was so important in relieving suffering and in bringing about a peaceful and meaningful closure to life, that every citizen was entitled to it, regardless of ability to pay. Although federal reimbursements for providing Hospice care have fallen behind the real costs of this care, this benefit has nevertheless supported the growth of quality end-of-life care for all Americans.

Most people don’t know how helpful Hospice can be especially if they get the service earlier (if done with active treatments). Most doctors don’t realize this either. Education of Hospice care is most important to all – professionals, family, friends, neighbors. If you know of anyone needing Hospice care – encourage them or their family to call any local Hospice for direction and help.