Psychosocial well-being and end of life care.

#ifaTO2018 Reflections

Our stories of elder care are more regularly being shared or overheard, and if you have not already, there will come a time sooner than later when you will encounter directly the care of an older adult nearing end of life. One could say at the same time, with your own future-self inner eye, you will in effect, be witnessing your own possible scenario.

In most cases, with the current options in our end of life care culture, our parent, relative, or friend winds up in an institutionalized care setting. What happens when you push through the front door, sign in the visitor log, walk the hallways, nod at the nurse and enter those singular tiny rooms (not knowing what you’ll see today)? Are you prone to wonder – is there a better way, what’s really happening here, how well does this serve us all – for here do, but for the grace of God go we?

It is with this remembrance, having experienced this more than once, that I was drawn to attend a relevant session at the recent global conference in Toronto for the International Federation on Ageing. One hour was not enough as it turns out in this case, because the value of the presentation went well beyond usefulness to those in the caregiving profession; it was something every family should know to help heighten awareness of what should really be happening here.

Addressing the growing psychosocial end of life care needs of older adults in nursing homes: The Value of Social Work. 

Mercedes Bern-Klug and Amy Lemke from the University of Iowa, School of Social Work presented a clear and compelling story using two real case studies of people in this setting and made the case for why we need to provide a more comprehensive model of care to include a greater on-site social work presence in nursing homes.

Sounding a little hefty for some, the term psychosocial is not the first lens most people would look through when walking into an end of life care situation. However, once exposed to it the way Mercedes and Amy presented it, you would have more confidence, patience and understanding with the process, a more informed view of how communications between the individual, a family member or advocate and care providers in the system should go.

It is too much to spell out everything from this session, but there were enough impressions to take away and share here. Using a number of reference materials, such as the nine stages of psychosocial development from Life Cycle Completed by Erik Erickson, (the 9th added by his wife Joan Erickson in 1998) – our presenters expanded on a model that can overlay with the care setting. For one thing, we are all interdependent on each other throughout our life course. Ergo, if I have part of this right, the basic trust we depended on as an infant is, full cycle, the same basic trust we depend on at the end of life.

Which leads to one other piece introduced by our presenters – the Dignity Model which can be sourced from the Canadian website Dignity In Care. In addition, well worth the read, from one of the reference documents from Mercedes Bern-Klug herself is A Framework for Categorizing Social Interactions Related to End-of-Life Care in Nursing Homes. After reading this, it will help keep you on your toes when thrust into what is a complex and emotional experience.

One phrase Mercedes spoke of in this session that registered in my ear, with a great case study also outlined in her paper in the Gerontologist journal, is mixed message dying:

“A lack of consensus about care plan goals can lead to mixed message dying. This category is different from dying contested because the main people involved in the resident’s care do not openly disagree; in fact, they may not realize that their opinions about the resident’s status and needs are not shared by others. The result can be contradictory messages about the resident’s status, confused goals of care, and inconsistent care.”

While all this may be an uncomfortable topic, and nobody should expect to be fully ready for it when duty calls, it is real – and the more we tell our stories the more equipped we will be for those contradictory messages.

Final thoughts after this excellent presentation.

Keeping in mind that there are many variations of institutional settings and levels of care for elder care, we are still constrained by the multiple, interchangeable labels we use, which blur our vision from seeing these places as more than strictly a medical or geriatric centre for outsourced care. I find the label nursing home becoming as archaic as what some still call “homes for the aged”.

Neither help stretch our healthier sense of what a better way of living in care can be. So, perhaps for now in Canada we can live with Long Term Care as the preferred choice. Whatever we call it, the final point from Mercedes and Amy, is for the significance of on-site social work presence and the need for a Person In Environment (PIE) approach in care facility settings which draws out the importance of understanding an individual and their behavior in light of the environmental contexts in which a person lives and acts.

As written in my finals notes taken at this excellent presentation, at the very least we need to take the time to understand the care system. Who has the formal and informal power (and for that matter what are the limits of our individual powers) and how do we better advocate for and influence positive relationships between staff, families and community networks?

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