Presentation on Home Care

I was honored by a request to share my perspective on home care at a translational medicine symposium focused on neurodegenerative diseases at Washington State University on October 27,.2017. My perspective issued from experience with ALS and home care, and as always I found myself advocating for they who are so frequently left behind by every aspect of our healthcare system. I also find that in imagining a solution to this predicament, I can see a better system for all of us. Surprisingly, my thoughts seemed reasonable to the healthcare and research professionals attending, and the feedback was all positive, and often grateful. The deficiencies of the long term care system plague us all, young and old, rich and poor, provider or recipient. The sources of the problems are deep-rooted and numerous, and overcoming them is no small task. It is time to get to work. Enjoy the presentation. -Serrana

Washington State University Translational Medicine Symposium 10/27/17

by Serrana Pilar

Thank you for this opportunity to share on the subject of home care.

I have spent 25 years using available resources to help build a care system for a friend, now 48, who was diagnosed with ALS at age 19. This presented daunting care challenges related to losing motor function and speech, while retaining intellectual and sensory function. Due to our unified care system, he has outlived his 5-year prognosis by 23 years, followed his artistic path as a musician of renown, and maintained a vibrant social life. The system holistically addresses three closely linked challenges: dwelling, care, and communication. I propose that further development of the following solutions to these challenges would benefit people with all types and levels of long-term care need, and those who care for them.

Let’s look first at dwelling. I think of the dwelling as a “locus” at the intersection of space, privacy, and interaction, where necessary relationships and activities thrive. I promote a guiding principle for creating such a space, which I call Socially Adaptive Residential Architecture, or SARA. Dwellings designed with the reality of caregiving in mind would eliminate many common obstacles to care.

Our team’s locus, initially a single-family hovel, has been doubled in size to accommodate my friend and his medical equipment, the tools of his musical occupation, a continual round of eight caregivers, and the family lives of the two caregivers who also reside in the house.

The locus must provide proximity, or co-habitation, of main caregivers with clients. In our case, I and another caregiver live with my friend, and my friend’s parents live next door, giving them flexible availability and effectively expanding our locus into three households, with my friend’s space being a semi-common area. This arrangement eliminates gaps in care and supports the caregivers, reducing burnout, isolation and invisibility prevalent in homecare work. It gives us all a large, extended family, complete with squabbles, turf wars, and black sheep – a position we rotate on a weekly basis. I’m “it” this week, so I’m happy to be here.

There are many obstacles to attaining the right locus, including inertia, common during a health crisis, when it seems to make little sense to move or remodel given a short prognosis, and there is a lack of knowledge of the manpower required for ALS care, and its scarcity. It can take years to overcome this inertia and take steps toward sustainability. In ALS, those years are critical.

Costs of purchasing and modifying property, rigid financing models, and residential zoning codes restricting second units, can all obstruct the locus. Without my wages as my friend’s nurse, long hours, massive debt, and exhaustion, our locus would have been out of reach. There is a need for architecture, zoning, planning and financing that serve the complex interactions required to meet care challenges, rather than causing extreme depletion of resources. The financial burden of attaining the all-important space in which to conduct care could be eased by the use of funds donated to ALS support organizations.

Second, let’s examine care. Care must be effective – defined as sufficient availability of caregivers whose long association (or high affinity) with a client results in familiarity with his nuanced communication and care needs. This might mean, for example, that the person with ALS need say only two words, rather than ten sentences, in order to have a particular need met. Familiarity conserves the client’s vital energy, reducing anxiety, depression, fatigue, isolation, and the attendant and damaging stress hormones. Low caregiver retention rates and poor aptitude for nuance in the available pool often subject the person with ALS to ineffective, insufficient, and impersonal care. To add to what Neilly (Buckalew, MD – fellow presenter) said earlier, food is medicine, movement is medicine, and care is also medicine.

Effective care must be self-directed by the person with ALS. This is made possible by ease of communication, familiarity, and flexibility of scheduling, giving the client the ability to use individual skill sets of caregivers to his best advantage. Flexibility, continuity and effectiveness of care are enhanced when caregivers and the person with ALS share the locus as home.

Financial access to care is problematic for many. When insurance or Medicaid provides licensed home care, a paradox arises. The elements required for a high functioning care relationship – familiarity, proximity, and intimacy – are prohibited or even criminalized by policies of the healthcare industry that define nurse/client relationships. Thus, being an employee of the nursing agency through which the insurance provides services, I would be in criminal violation of policy if I were my client’s friend, ex-girlfriend, housemate, landlady, or care coordinator. No contact – not even a phone call – is allowed outside an official nursing shift. Since close-knit relationships are the bedrock of a sustainable and functional care team, we need policy changes that support, rather than thwart and criminalize them. Relaxing restrictive policies would widen access to care by offering an opportunity to un-licensed caregivers for higher pay through licensure, without the need for secrecy.

Accessibility to care is further hampered by the two-to-one wage disparity between institutional care and homecare workers. My incentives for accepting such impoverishment are the well-being of my friend, the family environment, and the 30-second commute, but with such low wages, the expectation of undemanding work is a more common incentive for a home-care worker. To an ALS client, with no movement or speech, but a sharp mind and a body that feels everything, this is unworkable, causing our team to recruit our own nurses, and bring them to the agency for hire and assignment to my friend’s case. This prevents the terror of being left with a caregiver in whom my friend has no trust, and allows us to staff all the nursing hours the insurance provides. This is important because when available hours go chronically understaffed, the insurance company believes, mistakenly, that fewer are needed and reduces them irreversibly, and without warning.

Widening access to appropriate care is another use of ALS donor funds that would immediately benefit people with ALS.

Finally, let’s talk about communication. These problems of familiarity, access and retention bring new urgency to the importance of whatever system of communication the person with ALS uses. ALS often brings devastating effects from loss of speech, which can progress to a locked-in state in which no functional communication exists. Though brainwave technology may offer a partial solution to this problem, caregivers must still have familiarity and fluency to quickly and easily understand and meet the client’s moment-to-moment needs. Without familiarity a caregiver will have no grasp of the individuality and humor of the person with ALS. The stress, frustration, hopelessness, and discomfort, both mental and physical, of such a predicament are hard to comprehend, and contribute to the rapid demise of many people with ALS. The urgency cannot be overstated of directing resources toward recruiting, identifying, and retaining those caregivers who can best fill the client’s need for communication. Even if these caregivers are family or friends, it is crucial that their skills are assigned the value they represent and paid accordingly – for the benefit of the person with ALS. The mechanisms for compensation are few and the obstructions numerous. A comprehensive care system must address this obstacle to retention if it is to improve the life expectancy of a person with ALS.

To review, I’ve discussed three essential elements necessary to a successful homecare system:

Locus – A dwelling or dwellings that accommodate the necessary people and activities of the care team.
Effective care – Self-directed and rooted in familiarity.
Communication – Dependent on fluency at the receiving end.

This, therefore, is my message to those in the research community: By defining and providing effective care to subject populations in ALS research, care-related deterioration can be controlled. This will improve validity of research outcomes and enhance responses to treatments. Through partnership, the research community and care community can embrace and study the influence of care on outcomes, while improving and expanding our home-care “field lab” model, thereby helping more people with ALS realize longer, fuller lives. If developers, planners, and architects worked in pursuit of the shared living principles I’ve described, we could see growth smart enough to stave off the looming long-term care crisis.

To people with ALS and their families I say, overcome inertia early, make space for care, gather your army – energy for this effort decreases as time goes on. Combine forces and resources with other people engaged in this struggle – get strength in numbers, because you will find that, ultimately, manpower is your most important resource – more so than clinical care and technology.

To support these goals, I have launched the Jason Becker Creative Care Project, which will serve as a voice from the homecare trenches, promoting locus, effective care, and communication.

You can learn about it at: jasonbeckerccp.org

Thank you for your attention today; it’s been a pleasure to talk to you. I hope to continue the conversation with those of you seeking fundamental change in how we deliver long-term care.