For the past few months, as I prepare to retire from home hospice nursing, I find myself looking back on an incredible nursing career that included critical care, home care, and many years as a professor of nursing. My career in home care started in 1987 when I cared for my grandmother (at home) through her illness and death. Home care was largely uncharted territory for the dying then. At her last office appointment with her physician, he threatened to have me arrested if I took her home instead of to the intensive care unit. After a stern lecture from me on what it means to fulfil the promise I made to my grandmother, he let us go along with prescription for her pain medication. I was bruised in the battle, but ready to take her home. Soon after, she died peacefully in her own bed.
The single biggest change in my home care career has been the birth of evidence-based healthcare tied to publically reported quality measures of patient satisfaction. This change resulted in a return to basics: what does the patient want from care? Often the answer deeply personal and unpredictable. A recent example from my practice illustrates aligning care with the patient's goals. This patient's hospice care goal was to leave his bedroom and join his family for one last Christmas in the living room. The goal sounded simple. However, the patient had been in bed for many months and getting him out of bed safely would not be easy. An example of one shared decision was which wheelchair to use. Should we "force" the patient into a wheelchair too small for him to be comfortable, but which could fit through the bedroom doorway? It took five hospice team professionals, along with the patient, to make the goal a reality. After 2 months of planning, he rolled through the bedroom doorway into the living room as planned. He died a few days later, never wishing to get out of bed again.
The chances are high that I will be a home care patient at some time in the future. I can only imagine what care might be like. I expect to have implanted sensors that not only deliver information to my care providers but also send back information to automatically adjust medication doses, activity orders, and food prescriptions among many other tweaks to my lifestyle. I already have the right to end my life (I live in California) at a time I desire, if I have a terminal illness. Perhaps I will have the responsibility to end my life when there are too many of us who are too frail and many disabilities that require too many resources to live.
More importantly, we will continue to take increasing responsibility for our own health. We will get community, employer, insurance, and other incentives for effective self-management. Incentives will extend to families and communities with positive patient outcomes.
Finally, planetary health will become an integral part of our individual health. Creative methods of providing evidence-based care to every person, family, and community that includes consideration of the use of natural resources and the planet will be the standard of care. There is no doubt in my mind that home care professionals will continue to play a central role in finding innovative ways of keeping people healthy and comfortable in their own home while making a minimal footprint on the health of the planet.