Regina's Reflections

The Very Very  Sad Tale of Too-Short Hospice Stays.

A distressing fact of hospice care is that so few patients and families receive the considerable benefits of hospice care at home. Although Medicare and other insurers allow a generous period of hospice care at no financial burden to families, few take advantage of this benefit. Hospice guidelines allow for six-month periods of care with assessment and continuation of care at the end of each period, assuming patients still meet criteria. Virtually all patients easily meet these criteria. Although the initial benefit period is six months, few patients reach even this minimal level.

The contributing factors may include the following:

• Prediction of disease course is difficult and complex
• Physicians are often uncomfortable discussing terminality with patients, and some never mention that the illness will end in death. This failure in communication leaves family and loved ones without guidance during an especially complex time
• Physicians are sometimes concerned that by introducing hospice care, they will be perceived as giving up on the patient or that hospice will be interpreted as a cost-saving measure
• Miscommunication about the end of life can result in medical care that is contradictory to patient preferences Although the minimal period of hospice coverage is six months, few patients receive even this short amount of time in hospice care. Again, there are similar factors in all “late hospice discussions”

These can include:

1. Patients and /or family avoidance of discussion of end of life issues
2. Co morbidities may mask terminal diagnosis
3. Patients may delay or refuse medical follow up
4. Physicians often focus on cure rather than palliative treatment

At Always Their Home Care, we are passionately committed to the unique value of hospice care. We are proud to be the preferred provider for many of Connecticut’s Hospices whose patients require some additional supportive care during their hospice stay. We are grateful to our hospice colleagues for their trust in us and we provide our finest care and support by meticulously chosen hospice caregivers. But alas, we all too frequently meet the challenge of all hospice care providers…. Too Little Time…. For long distance family members to visit one more time, for seeking the amazing support of Hospice social workers, for final thoughts and words, for supporting each other during this sacred time. We all do our best. We usually feel profound sadness, ambivalence and sorrowful emptiness at Not having done enough.

Seeking more sad facts?

Hospice professionals continue to be concerned about the number of people accessing hospice care late in the course of an illness. The NHPCO report indicates that 53.8 percent of Medicare beneficiaries received hospice care for 30 days or less in 2018. A quarter (27.9 percent) of beneficiaries received care for seven days or less, which is considered too short a period for patients to fully benefit from the person-centered care available from hospice. ( NHPCO Facts and Figures (PDF)

In spite of our frustration in late -starting hospice care, we are committed to advocating for our clients earlier in their disease progression. Observing for any indications of weakening and debility of the elderly people in our care and communicating these changes to family members and physicians, early discussions of hospice and palliative care. We believe it is never too early to understand end of life options.

Recently, a daughter of a hospice client for whom we cared for a mere 3 days before her death brought me to tears, not uncommon in our world. With simple sincere words she described her wonder, amazement and gratitude for her mother’s caregiver. Not only did her mom die in comfort and peace, the family felt grateful and fully supported. All in a day’s work for our special caregiver.

A promise to all our clients: Next time we will BEGIN HOSPICE SOONER. ■ 

At the Eleventh Hour: Psychosocial Dynamics in Short Hospice Stays Deborah P. Waldrop, MSW, PhDThe Gerontologist, Volume 46, Issue 1, February 2006, Pages 106–11 http://doi.org/10.1093/geront/46.1.106 Published: 01 February 2006. https://www.nhpco.org/hospice-facts-figures/