She had been both a colleague and a dear friend of many years. We had supported each other through serious and not-so-serious ups and downs in both our lives. Now the cancer for which she had been in treatment for a year or so was wreaking its inescapable havoc. Further treatment was medically futile and would only have added to her misery. Nonetheless, her dearest hope was to complete a book which she had begun writing prior to her diagnosis. Hospice was called. What Jillian (not her real name) wanted more than anything else was to be adequately free of pain but also clear-headed enough for long enough to finish her book and send it off to her publisher. Hospice was able to provide care that enabled her to meet that objective. Her pain was managed well enough, without clouding her thinking, to enable her to write. She did not live to see the book published, but died knowing that it would be.

I have been drawn to the concept of hospice care from the first time I learned of it. There comes a time when further medical treatment only worsens suffering, as would have been Jillian’s situation. There is still much that can be done at that point to enhance someone’s quality of life and to support the dying person, family and friends through the process of dying and grieving.

In what follows I have relied heavily on information provided by the National Hospice and Palliative Care Organization and their supporting Foundation, along with other sources. This nonprofit organization is the nation’s largest that represents hospice and palliative care programs and professionals. It advocates for patients and families, develops educational programs and materials, and conducts research.

November has been designated as National Hospice and Palliative Care Month. These two are similar but not the same. People often confuse them. While palliative care is sometimes administered by a hospice organization there are major differences.

• With palliative care people can also receive curative treatments that may cure their illness; hospice treatments are aimed solely at relieving symptoms and providing support, not curing. Since there are no time limits on when someone can receive palliative care, it is available to patients who want and need comfort at any stage of any disease, whether terminal or chronic. In a palliative care program, there is no expectation that life-prolonging therapies will be avoided.
• Hospice care typically begins when the person is thought to have six months or less to live (although that isn’t a hard-and-fast rule). Palliative care for those with a serious or chronic illness can begin any time, including at the time of diagnosis.
• Medicare pays for hospice for those who are covered while only some palliative treatments are covered.
• Medicaid covers all hospice charges in 47 states, but it only covers some palliative care treatments.
• Most private insurance plans have hospice benefits, while there are few if any palliative care packages available through most private insurers.
• The average life expectancy for someone in hospice care is a matter of months, while it is typically a matter of years for someone in palliative care.

While both may entail similar services, I will focus on hospice. But first a little history. In Western society, the concept of hospice has been evolving in Europe since the 11th century. Then, and for centuries thereafter in Roman Catholic tradition, hospices were places of hospitality for the sick, wounded, or dying, as well as those for travelers and pilgrims [thus relating it to the concept of hostel]. The modern concept of hospice includes palliative care for the incurably ill given in such institutions as hospitals or nursing homes; care can also be provided to those who would rather spend their last months and days of life in their own homes. The first modern hospice care was created by Dame Cicely Saunders in 1967. Dame Cicely expressed the goal of hospice care this way: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

Hospice provides services to support both the dying person and their family members and friends. Typically, care is provided by an extensive specially trained care team. The group of people usually includes a primary care doctor, nurses, home health aides, spiritual counselors, social workers, pharmacists, trained hospice volunteers, and bereavement counselors. The primary care physician and attendant nurses coordinate all aspects of the patient’s care. Home health aides help patients with personal care and daily maintenance.

• Coordinating an overall care plan.
• Managing pain, nausea, anxiety and other symptoms.
• Assistance with daily care such as eating, bathing and dressing.
• Access to any needed medical supplies.
• Professional counseling (from mental health professionals, social workers and chaplains as requested) for the patient and their family members.
• Caregiving assistance or respite care from the primary care givers.

Ultimately, hospice care focuses on helping patients relieve their symptoms while providing these patients and their family with support during their final months. Entering hospice does not mean “giving up.” Nor does hospice “help people to die” in the sense of shortening their lives, both common misperceptions. Hospice is a change of focus, from curing illness or prolonging life at whatever cost to providing comfort and symptom management, enabling people to live the best life possible in their final stage of life.

Christine McDougall’s poetic reflection, “Liminal,” reminds us that the threshold experiences such as dying, the in-between points of our lives call for our utmost attention.

The space between
Neither this nor that
Ripe, potent, uncertain, shaky
A Dawning, A Dusking…
The immanent threshold emerging
crossing…to what?
Slow down
The moment is calling you
to pay…exquisite….attention…

Hospice care pays exquisite attention to the person in their wholeness, including their social context. Hospice teams companion those who are dying and those who love them. As Dame Cicely Saunders said, “We will do all we can not only to help you die peacefully, but also to live until you die.”