A call for solutions within long-term care
Unfortunately, with the COVID-19 pandemic, long term care has faced significant challenges.
With isolation restrictions, family members who were traditionally more involved with care are no longer allowed to visit, assist with care, or advocate for their loved ones, especially those that lack the capacity to speak for themselves.
As staffing concerns are aggravated by the situation, residents are now (more than ever) encountering unfamiliar faces and experiencing care inconsistent with regular desired routine.
Speaking from personal experience, working in the front lines of long term care, Allison Bolton (one of our directors here at Preferra Medical Communications) feels the burden of being estranged from her loved one who resides in a separate nursing facility. She finds window visit’s the hardest. While she is happy there is a safe way to interact with her grandmother, it is distressing to see aspects of how she prefers her care not being honoured. Despite dementia, blindness, and being wheelchair-bound, she has always cared about appearance. Not having her teeth in or purse on her lap triggers increased anxiety. This manifests in the form of picking at her frail, vulnerable skin, causing an increased risk of wound infection. From experience, Allison understands that it can take months to years to fully understand a person’s preferences. This is learned best when family members, health care providers and patients work as a team. Without a system to ensure the consistent communication of care needs as they are learned, adherence to preferences falls short.
This story aligns with evidence from current studies, that demonstrate strict compliance with medical obligation and duty is insufficient to meet the requirements of palliative care.
Speaking from our experiences, patient preference can not only help to establish a better relationship with residents but also help to de-escalate situations. It is important to understand that resident violence can be a symptom of dementia and delirium, and often exhibited to express unmet needs. Labelling a resident with a behavioural or psychological illness as "aggressive" or "violent” can cause altered care and stigmatization. Thus, it is critical to understand resident preference to have safe care outcomes.
A call for solutions within hospitals
Hospital care during COVID-19 has exacerbated a focus on biomedical, disease-centred healthcare, which exemplifies medical obligation, however it has had negative implications.
With vigorous isolation restrictions in place, family members who were traditionally more involved with care are no longer allowed to visit, assist, or advocate for their loved ones. This becomes especially challenging for patients who lack the capacity to speak for themselves. Families seek the reassurance that care priorities are being acknowledged in their absence.
As providers revise care routines and transition to other units in need, this leads to decreased provider continuity and care that may be inconsistent with therapeutic routine. These aspects of care are especially important for long-term stay patients, including those who reside on cancer/palliative and transitional care units.
Thus, it is evident that a biomedical-focused approach leads to a lack of humanism, where the unique human experience is devalued and patient autonomy is threatened. Patients who receive care inconsistent with their priorities may have decreased quality of life and providers may begin to lose site that who they are caring for are (in fact) people with stories and lives of their own, struggling to uphold the legal declaration that all patients should be treated as persons.
When patients are in their most vulnerable states, intubated with no voice, oftentimes it’s those small acts of humanism that can make the world of difference. Braiding the hair of a person with indigenous heritage, allowing quiet time for prayer, or simply the touch of a hand - care consistent with preference.