I finally read something, in the NY Times, about The Zen Hospice Guest Home* in San Francisco, which closed down last summer. Though The Zen Home was known to many workers in end-of-life care, others may not consider this significant news. It seemed incredibly sad to those of us who understand the immeasurable value of a home-like setting in the non-profit sector for dying persons unable to remain in their homes, with excellent care provided by staff experienced in end-of-life care. The Zen Home closure represented just another demise of a wonderful option for the dying. Financial difficulties were cited in funding the day to day care for residents at the guest home. This is becoming a common scenario in other communities across the country. Options for non-institutional end-of-life caregiving in places other than home are often dependent on philanthropic donations. Increasing funding dilemmas for smaller and more intimate hospice settings have become common, while these settings are also being affected by a more fettered and complicated Medicare hospice regulatory and reimbursement system.
For many of us, if asked where we hope to die, “in my own home” is the answer. But the reality is, many of us will not have this option. Some research predicts nursing homes will indeed be the place of death for nearly half of us by 2030, even though not preferred by most of us. Deaths in assisted living facilities are often considered and reported as “community deaths”, (versus more “institutional” places of death), though some of us would argue that these facilities’ end-of-life care provision is not synonymous with hands-on care received in a person’s home by family members.
Sadly, many of the aggregate living settings, whether considered institutional or not, are too often places plagued by staffing shortages, a revolving door of new and minimally trained workers, and profits paid to stockholders and owners, rather than shared with the minimum-wage-paid-workers who are actually doing the care-giving.
Regardless of the claims that progress is being made in hospice and palliative care accessibility and improving end-of-life care, I believe we will face an ever-increasing crisis in this country as our growing numbers of frail elderly impact both the place and the persons who will provide care for the dying. We ship people out of hospital beds as they are dying, often to avoid penalization and receive adequate reimbursement from the Medicare system, and we have overwhelmed facility staff who simply cannot provide the hourly care needed when one lies dying. (At best, an average of 4 out of 24 hours represent the total patient care hours in most nursing home staffing ratios and will never meet all the care needs of the dying).
What I will need, when my dying becomes a reality, is someone who will be the gentle hands and give the loving care in the middle of the night, when in a confused state I try to get out of bed; and someone who will clean my mouth, all dry and crusted from the “mouth breathing” common in the dying; and someone willing to turn me side to side and change my soaked sheets, from the recurring episodes of incontinence. Who will provide regular drops of medication in my mouth, when I can no longer tell someone that my pain is worsening, and I have lost the ability to both talk and swallow? A physical presence is needed, and it may not be my loving family member, but an underpaid caregiver in an institution that is severely understaffed and whose staff is overwhelmed. How do we intend to find and train and retain the workers in the future who will actually do the physical care needed for the dying?
Dying well needs more than an educational focus for the upcoming generations of medical providers and academicians. Trained caregivers must be available in order to provide excellent hands-on end-of-life care in these institutional settings where many of the dying will reside. Currently, across the US, nearly all the day to day care in our institutions is provided by aides who are mostly high school graduates making slightly above minimum wage, many who worked as baristas last week and an aide the next. This has not changed in the last 40 years, since I began my own nursing career as a nurses’ aide. Chronic staffing shortages and high turnover rates plague the institutional settings that provide care to the aging population with advancing disease, many of whom will die in these institutions. We need a new plan and allotted funding, freed from the greed of increasing profit margins and corporate agendas, to improve these conditions in the future.
We may be dying in places not of our choosing with care provided by too few hands at the time of our greatest need. We will need more than education and research to change how we die. We will need adequate staffing ratios in facilities, with accountability. We will need vastly improved monetary compensation, increased recognition, and genuine support for those who actually do the physical day to day care of the dying (those same minimally educated employees, also minimally compensated, who are doing the bulk of the care in facilities across the US). We will need social change that demands a shift from profit-motivated health care to prioritizing the day-to-day delivery of excellent end-of-life care for all.