Heidi Cross, MSN, RN, FNP-BC, CWON

"It was the best of times, it was the worst of times."– Charles Dickens

When Charles Dickens wrote this introduction to his Victorian-era novel, A Tale of Two Cities, his novel was aimed at the brewing French Revolution, but he could have been writing about the best and worst of modern American health care. His novels depicted how life could be pretty miserable during those times, with no social safety net and no real medical care. Fortunately, times have changed, and we have improved social supports as well as, some would argue, the best health care system in the world (although, sadly, not all people in the United States enjoy access to our great health care system, but I digress).

Kennedy Terminal Ulcer/Palliative Care and Hospice Care

Life Expectancy

Life expectancy in the United States currently stands at around 78 years of age, largely the result of public health initiatives, improved access to food, medications, and advanced health care.¹ Compare this with a life expectancy of around 35 to 40 years of age in Dickens' time.² In the United States we have great expectations when it comes to our health care and life expectancy. We can prolong life far longer than ever thought possible, with the availability of medications, intensive care units with advanced cardiac and respiratory support, nursing care, artificial nutrition, pain management, surgical skills, and mobility aids. Truly, these are the "best of times" when it comes to health care.

Dying Then and Now

Compounding these issues is the fact that death has become a stranger to us. In days of yore, as the end of life approached, a typical scenario would be of death at home, with supportive family and comforts nearby in familiar surroundings. There was a greater acceptance of passing, a greater realization that death is an expected part of living, an acceptance of, as I once heard said, "nobody gets out of this alive!" Fast forward to our current time. Grandma and Grandpa begin showing signs of frailty and advanced age such as falls, confusion, decreased vision and hearing, and increased morbidity. It is difficult to see a loved one failing, especially with all our many advanced health care options. A modern scenario in the United States that I have seen countless times is one of admission to a skilled nursing facility, superimposed on perhaps multiple hospitalizations, in and out with exacerbations of morbidities that in distant times would have caused death sooner. Great expectations abound!

Grief and the Worst of Times

Sadly, seeing a loved one start to fail and die makes this time in our lives the "worst of times." Patients and families go through the stages of grief outlined by Elizabeth Kubler-Ross: denial, anger, bargaining, depression, and acceptance. Grief is a very personal experience; everyone grieves differently. The five stages may not occur in any specific order, not everyone goes through every stage, and certainly not everyone achieves acceptance. No one disputes that as part of the dying process we may experience organ failure, including cardiac, renal, respiratory, and other body systems or organs. Skin is an organ, too, and it is a well-accepted fact among health professionals that, like any organ, it may fail. Skin failure is real and manifests outwardly. It can be shocking, particularly to the layperson"s eye. This, to me, is a big reason we see so many pressure ulcer lawsuits.

The Legal Side of It

I believe these lawsuits occur most commonly among loved ones who are locked in a struggle with their grief in the anger stage of the process. They may have made it through the denial stage, but within this anger level, their loved one has died, and the blaming begins. They have been in denial that their loved one was dying, that there was nothing more the health care system could have done, and that maybe palliative and hospice care was overdue. They are angry that their loved one has passed and at perceived poor care resulting in an outwardly visible pressure ulcer. Plaintiff attorneys feed into this and elicit those angry feelings with ads about "Nursing home neglect and abuse." It is of course always possible that a facility has provided suboptimal care, and it is the job of the expert witness to determine whether standards of care have been met related to skin care and skin breakdown.

If standards have been met and the patient presented with what looked like a terminal illness, we can more convincingly conclude that this was an unavoidable pressure ulcer secondary to skin failure, with reasonable medical and nursing certainty. Despite our "best of times" in health care, amid the "worst of times" in patients' lives, it can be a challenge to adjust patients' and their families' expectations to more closely conform to realistic expectations. We as health care providers need to be respectful of their feelings, yet compassionately and openly communicate about the reality of the situation.

References

1. Hacker DJ. Decennial life tables for the white population of the United States 1790-1900. Hist Methods. 2010;43(2):45-79.

2. Roser M. Life expectancy. Our World in Data. Revised October 2019. https://ourworldindata.org/life-expectancy. Accessed December 2, 2019. About the Author

Heidi H. Cross, MSN, RN, FNP-BC, CWON, is a certified Wound and Ostomy Nurse in Syracuse, NY. She has extensive experience caring for wound and ostomy patients in acute care as well as in long term care facilities. Currently, she is employed by CNY Surgical Physicians consulting for nursing homes in the Syracuse area, and has served as an expert witness for plaintiff and defense attorneys.