She lay down in a room with a nasal cannula blowing oxygen lightly into her nose, unable to get out of bed. Her strength was progressively failing. Tired of fighting this disease, her sons, her daughters, her grandchildren surrounded her… solemnly accepting the impending end of her life. The hospice nurse sat at her bedside administering the morphine until her flame extinguished.
Sadly, this is what most people think when they hear the word hospice. “I am not ready to stop fighting yet” is what I hear from most family members and patients when I first sit down to present them the option of hospice. As a result, there exists the idea is that hospice care is appropriate only in the last days of life.
This idea can be insidious… dying is a process and sometimes it is a long process. Therefore, the belief that hospice is only “end of life” care deprives many of the necessary support they so desperately need. It forces those who are most vulnerable to go through a stressful ordeal of overtreatment and medically futile treatment.
and of those who received hospice, received it late into their dying process. The median length of stay for hospice patients in 2017 was 24 days. Let’s think about that for a minute… the disease trajectory that allows a patient to avail of the most robust form of palliative care is an expected decline in six months or less. A decline so severe that may result in the end of life, a lot of support is needed here — medical, emotional, psycho-social, and spiritual; yet the median time of stay in hospice care is the last 24 days of this grueling and stressful period.
Mrs. Jane Doe could be battling Cancer, Congestive Heart Failure, Alzheimer’s, Parkinson’s Disease, Renal Disease, Liver Disease, AIDS, or a combination of many other life-limiting, progressive, or rapidly worsening illnesses. The doctors cannot feasibly cure her anymore. She gets weaker and weaker, less mobile, unable to keep up with her appointments, and progressively loses appetite. Mrs. Jones continues to lose weight, then begins falling, or starts getting infections, urinary tract infections, pneumonia … you name it. She begins to go to the ER, is admitted a couple of days, then either goes home or to a nursing facility for therapy.
Mrs. Jane Doe never really gets better, she never really is cured of her illness — but the cycle of hospital to home to hospital begins. Not only is it financially costly, but it is emotionally, physically, and spiritually draining. I think hospices play a big role in the lack of awareness and underutilization of this federally-funded elective benefit.
As hospices, we must make it our mission to provide more education to the community as a whole; to patients, to families, to providers, and to other clinicians. Consequently, hospice agencies must not “fight for patients”, as this creates an adversarial relationship with those who we are attempting to serve.
Hospice agencies must be a tool with the aim to collaborate with the attending physicians and clinicians who build a relationship with their patients and families. It is the doctors and providers, who ultimately face complex ethical choices of overtreatment and medical futility. We as hospice agencies must be part of the choices presented and have honest conversations about the goals of care.
What do we mean when we speak about “Comfort Care”? Hospice is the most robust form of palliative care. One of the great advantages of having hospice care is the speed at which healthcare is delivered. There are recurrent weekly visits from a nurse, however, in hospice, the nurses are the eyes and ears of the attending physician and/or medical director. Subsequently, medications, equipment, and treatment can be delivered within hours. There is no need for appointments or authorizations.
The Case Managers’ duty is to coordinate care within the Medicare Hospice covered benefits and outside the covered services. Every two weeks the entire members of the IDG sit together including the medical director to review each and every single patient’s progress and needs.
Social Services and Spiritual counselors are available for resources and psych-social needs. Sometimes there are complex family dynamics, emotional distress, grieving in anticipation of a loss. These Hospice professionals can help with that.
From navigating applications for meals on wheels, In-home Support Services, Medical Letters for FMLA, Immigration, etc. to coordinating support with a Rabbi, Priest, Imam, or pastor… Hospice can help with that.
Hospice also helps families tremendously with showers, bed baths, passive range of motion exercises, and supplementing supplies such as diapers, gloves, wipes, and other hygiene and personal care items.
One of the most important aspects of Hospice is having someone you can call for help 24 hours a day.
In 2017 only 27.1% of Black American medicare recipients who passed away received hospice care. Only 26.1% of Asians, 33.8% of Caucasians, 28% of Hispanics, 25.6% of Native Americans, 27.1% of other and 25.7% of unknown [race] medicare recipients who passed away received hospice care. Let’s change this.