Oct 09, 2020
By Kylie Teggart

Who is steering the ship? An acute care nurse’s reflection on community palliative care

Takeaway messages

  • Home is truly the best place for many of our patients with multiple chronic conditions. It’s a gift that all should be able to experience as they near the end of their lives.
  • Home care nurses are experts at critically assessing and advocating for their patients despite a lack of resources and technology.
  • More investment is needed to optimize the role of community nurses to deliver high-quality, integrated care.

“Many people, including nurses themselves, do not even know what home care is until they need it — and then they see how poor the system is” (Shamian, 2014).

It was a rainy, post-night shift afternoon when I got the call from my family. My grandfather, an extraordinary 87-year-old who spent the last several years navigating multiple chronic conditions with the help of his wife, Debbie, was being discharged from the hospital to palliate at home.

The doctors agreed to honour my grandfather’s wishes to be at home if his family could help care for his complex needs. Given my position as the only nurse in the family and the need to limit the number of close contacts in light of COVID-19, there was absolutely no question in my mind when I volunteered for the job. Surely providing home care for one patient couldn’t be that hard, right?

I sat back in surprise as my acute care mindset shifted before my eyes. It first dawned on me that home is truly the best place for many of our patients as I watched my grandfather’s hospital-associated delirium clear within a day of being back in his own environment.

To watch as he completed tasks that were important to him, enjoyed afternoons outside in the sun, and spent time with friends and family was truly a gift. So why can’t more of our patients be afforded this same gift at the end of life? And what happens to the people whose families cannot support them in this way?

Family caregivers

I can truthfully say that I never fully understood what it meant to be a family caregiver until I became one.

I can truthfully say that I never fully understood what it meant to be a family caregiver until I became one. In the month that I lived with my grandparents, the major difference that I noticed between nursing and caregiving is that night shift is not coming in at 19:00 to relieve you.

On top of the nursing care required, you are also cooking all the meals, coordinating multiple appointments, arranging for equipment and supply deliveries, and interacting with a variety of different health-care providers every single day. This is all on very little sleep and while trying to maintain a personal relationship with the patient.

I am deeply troubled that we expect families to do this for 24 hours a day, day in and day out, often for an extended period of time, with so little support. Despite Debbie’s expertise as my grandfather’s caregiver and my role as a nurse with insider knowledge of the health-care system, at times we felt lost at sea. I found myself constantly coming back to the same question: who is steering this ship?

Family caregivers are undoubtedly our patients’ best advocates; however, we cannot expect them to become expert care coordinators and system navigators seemingly overnight.

Set up to fail?

Throughout this experience, I have witnessed many amazing nurses, PSWs, physicians, and allied health providers. They are all clearly trying their best in a system that seems determined to let them and their patients falter, or altogether fail.

I have developed the utmost respect for nurses who work in home care. To do so much, with so little, is truly an art. For example, the acute care issue regarding the ever-elusive location of the bladder scanner is further complicated in home care by the fact that there isn’t one.

Home care nurses are experts at critically assessing and advocating for their patients despite a lack of resources and technology. Unfortunately, the continuity of care they strive to provide is affected by persistent issues with scheduling, staffing, and management that is also stretched too thin. With often a different nurse visiting for a short amount of time every day, I continually found myself noting the clear absence of those in the position to steer this ship that we found ourselves on.

Enter the advanced practice nurse

Patients are ultimately the ones who suffer the most from the system-level flaws that currently exist in home and community care.

I believe that advanced practice nurses are in the perfect position to take the helm. There is a clear and urgent need for more palliative care clinical nurse specialists in the community to coordinate care, close the loops in communication, and break down the dangerous silos within which we currently see care being delivered.

I also believe that there is a great opportunity to have more nurse practitioners in visiting nursing roles, especially in our rural communities. This would help to eliminate unnecessary (and expensive) trips to hospital emergency departments and reduce unwanted hospital admissions for our palliative patients.

System-level flaws

Patients are ultimately the ones who suffer the most from the system-level flaws that currently exist in home and community care. The care they receive from a home care nurse, whose competing priorities have them trying to attend a team meeting by teleconference at the same time that they provide wound care, is suboptimal.

The unreasonable expectations placed on family caregivers can lead to burnout and strained relationships. Hours spent in an emergency department — because there is nobody who can come assess their relative and prescribe appropriate medications in their home — are distressing and inappropriate at the end of life.

Investing in high-quality care

It is no surprise that people want to be at home at the end of life. Our nursing leaders have been telling us for years that we need to optimize the role of community nurses in order to deliver high-quality, integrated care. Yet it is often not until we find ourselves in these personal situations that we are forced to look through a magnifying glass at the current and glaring issues in home care.

I therefore write this reflection out of necessity — not only in an effort to make sense of my own experiences, but also to add my voice to the call for investment in the home and community care sector. Increased attention and resources are necessary in this setting to achieve patient- and family-centred care, avoid costly institutionalized care, promote recruitment and retention of highly qualified health-care providers, and ultimately improve the delivery of end-of-life care.

Our patients and their caregivers are counting on us to right the ship.

References

Shamian, J. (2014). Foreword. In T. Shalof’s Bringing it home: A nurse discovers health care beyond the hospital. Toronto: McClelland & Stewart.

Kylie Teggart, RN, BScN, CON(C), is a PhD student in the Aging, Community and Health Research Unit (ACHRU) in the McMaster University School of Nursing in Hamilton, Ont.

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