Hospice Care in the ALF
A Winning Situation for Residents, Facilities and Hospice
Agencies
By Michael D. Visconage and Pamela J. Parker, MS
 Lily
was 82 years old and a bright spot in her community. She had only minor health
problems, needed minimal assistance with activities of daily living (ADLs), was
cognitively sharp and had an unfailingly positive attitude that helped her and
those around her cope with the realities of growing old. Her family ideal was
that they be involved and responsive, yet understanding of the challenges the
assisted living environment sometimes poses. Lily was a resident for more than
three years and, by all reports, was happier at our facility than she had been
in many years.
It was Aug. 22 when Lily went to the hospital for a computed tomography (CT)
scan. She was having severe headaches and her vision was becoming blurred. No
one thought it was a great concern; the CT scan was merely a precaution.
The results, however, were chilling.
Lily had a brain tumor.
Further testing revealed that the tumor had metastasized and there was little
positive news from her specialist. There was no realistic treatment that could
be offered. Keeping the pain in check and making her comfortable was the best
the medical experts could offer. We where advised she would become increasingly
ill and frail and die within four months.
Our normal procedure for a seriously ill resident was to arrange discharge to
a hospital or skilled nursing environment. Lily's doctor suggested hospice care
via a hospice agency. Shortly thereafter, her family approached us about Lily
remaining in the place she had come to know as home. Because of Lily's
personality and the positive relationship with her family, our immediate
reaction was to find a way to allow her to stay. But could it be done? What
would the hospice agency provide? How would the other residents and their
families react? What would our staff need to know or do? Did state regulations
for assisted living facilities allow us to continue to care for her under this
circumstance? Was this a prudent business decision? Were we ready to work with a
resident on hospice care?
As we started our decision-making process, we quickly realized how little we
knew about current hospice benefits and care. The research process became a
re-education for the staff. Most had a vision of hospice as a standalone
facility where dying patients resided, with family interaction and caregivers
standing by to make them comfortable. While this model exists, it accounts for a
very small percentage of hospice care. Hospice agencies are able to provide
services in an assisted living setting in the same way home health agencies
bring in services. Some of the basic criterion for hospice care include:
- Physician's certification of terminal illness diagnosis with 6 months or
less expected morbidity.
- Re-evaluation required after 180 days and every 60 days thereafter.
- Palliative care only (pain control and comfort).
We also learned that, depending on the level of assistance needed, hospice
could provide support that would relieve our staff of some duties. The hospice
agency would become Lily' care manager, coordinating with her physicians,
managing her medications and arranging delivery of any medical equipment she
would need. In essence, it would streamline the care coordination process and
minimize our coordination of these tasks. Lily would actually be easier to care
for when compared to a resident with a complicated medical, pharmaceutical or
administrative profile, but who does not have a terminal medical condition.
As Lily's health or abilities to perform ADLs declined, the assistance she
needed could be accomplished by a hospice nurse aide on scheduled visits. She
would have regularly scheduled nurse visits as a requirement of the care plan
for hospice cases. One hospice agency representative pointed out that, when a
more critical or complex period develops, they could provide nurses and aides at
her bedside around the clock for a short period of time. This continuous care
was available until Lily stabilized and when the active dying process began.
Depending on the agency, continuous care service may be provided in a
facility operated by the hospice agency if necessary resources cannot feasibly
be provided in the resident's room. This facility may be a single floor at a
local hospital, skilled nursing facility or assisted living facility leased by
the hospice agency and outfitted with medical equipment appropriate to the
medical nature of the care provided.
The hospice representative reiterated that the goal of the process was to
ensure patients are pain free and to provide comfort to the patient and family.
The hospice team was made up of specialists (doctors, nurses, social workers and
chaplains), would provide for all needs of the client and make appropriate
coordination with family members, responsible parties and medical authorities as
needed. Ancillary services include religious last rights and grief counseling
for family members. Upon death, the hospice agency prepares death report
paperwork and makes appropriate arrangements with funeral services for removal
of the body.
Our next step was to review the practical considerations if we agreed to
allow Lily to stay. First, we checked state regulations for pertinent guidelines
for hospice care and found no barriers to retaining the resident based on our
category of licensure. It was permissible since she was already a resident at
the time of her diagnosis. Our facility decided that an internal policy for
providing hospice care would require a resident to have a single room. The
dynamics of the situation demand space to work and privacy that are not
available in a shared room.
Informing and educating the staff proved to be vital to success. We informed
them of the unique circumstances and asked for their help with something we had
not attempted before. The unanimous, positive response was a tribute to their
professionalism and the closeness they felt to this resident and her family.
The staff was briefed on the care and services the hospice agency would
provide and were reminded of the importance of resident confidentiality,
especially in hospice cases. We reviewed do not resuscitate (DNR) orders and
received an orientation of medical indicators that would signal a progression of
the disease. The hospice agency provided in-service education for the staff on
the disease process and emergency procedures. Rethinking some ingrained policies
required special attention. Calling 9-1-1 was the usual first action for
residents who have a critical event. For hospice clients, the hospice nurse
would be the first call since emergency medical services are contrary to the
palliative care plan.
From a pragmatic business perspective, hospice care seemed to provide
tangible and intangible benefits. In its most immediate sense, allowing Lily to
stay meant maintaining census for a matter of weeks or months. Thankfully, the
practical and ethical matched up in our decision process. The only remaining
question was, How would the other residents react? Should we tell them of Lily's
terminal condition?
The uniqueness and size of each facility clearly plays a role in this type of
decision and the profile of residents will impact the decision. In a facility
specializing in dementia care, the awareness of the other residents may be
irrelevant. In other cases, it may be more significant to inform the families of
other residents, but this also requires some consideration.
First and foremost, we asked Lily and her family if they wanted this
information to be known. The decision was to keep it private, at least until her
deterioration was readily apparent to other residents. Only then did we inform
those who could cognitively grasp the situation.
Lily passed away in January and her daughter still stops by with flowers or
cookies for the residents. The staff feels a bond with each other, with Lily's
daughter and with the memory of Lily and the concept of letting Lily live out
her last days at home.
Looking back, it became a story of how good things can grow out of a dark
experience. While we did not want to begin creating a new niche for our facility
as a hospice site, it was clearly the right choice for this resident.
Officially, our policy is for provision of services on a case-by-case basis.
Given the right combination of resident profile, family support and hospice
agency services, we would certainly do it again.
Michael D. Visconage has more than 20 years of management experience and
is currently the chief operations officer for Parker Personal Care Homes LLC, of
San Antonio, Texas.
Pamela J. Parker, MS, is the director of professional relations for Vista
Care Family Hospice in San Antonio, Texas. She has managed assisted living
facilities of various types and sizes for Marriott Senior Living Services,
Options Residential Care and Villa Serena Alzheimer's care.
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Resource Guide
The National Hospice and Palliative Care Organization
www.hhpco.org |
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