[K]athryn Martin, registered nurse and Faculty Lecturer in the Faculty of Nursing, doesn’t attend the funerals of her deceased patients. But she knows nurses who do.
“You become quite close with the families,” Martin says. “It’s okay to have feelings about the situation. I respect other nurses attending funerals, but I personally don’t (attend). It’s important to set your own boundaries.”
Martin says decades of working in the intensive care unit have made an impression on her. The ICU is a hospital unit dedicated to treating patients with severe and life-threatening conditions. She remembers cases from years ago with vivid detail, and feels she has made a difference in the lives of her patients.
Nursing is a complex and dynamic profession. RNs work with patients and families around the clock, and are often advocates for patients and their families. Nurses advocate for time, information, increased pain medication, spiritual services, and any other needs families may have.
One of nursing’s significant challenges is transitioning patients with life-limiting illnesses — illnesses in which death is the expected outcome such as cancer, heart disease and dementia — from curative to palliative care. The goal of curative care is to modify a disease, either through management or working towards a cure. It can involve intense medication regimens, 24/7 nursing care, repeated hospital stays with limited visiting hours, and it isn’t often provided at home. Palliative care, alternatively, focuses on comfort as opposed to modifying or curing a life-limiting condition. It is provided both at home and in health facilities such as long term care centres or hospitals. Common aspects of palliative care are reduced invasive procedures and increased
When the transition between curative to palliative care goes well, the grief impact on families is minimized and the work experience can be satisfying for health care professionals. When it doesn’t, many walk away with feelings of hurt, failure, and of letting loved ones or patients down — people close to patients often interpret the transition as medical professionals letting patients die. An article in the Journal of Palliative Medicine reports that during the five years previous to 2012, at least half of the physicians surveyed had experienced a patient’s family members, another physician or another health care professional describing their palliative methods as “euthanasia, murder or killing.”
“Transitioning from curative to palliative care is anything but a static process,” says Kristin Jennings, an RN experienced in palliative care. “Unfortunately, (to some) it feels as though our medical system gives up hope.”
In spite of treatment that can be harsh, palliative care is not diagnosis-centred, but person-centred care. It focuses on the needs of all key players: patients, families, caregivers, and loved ones with hopes of creating the most possible value in a person’s last days, weeks, or months. It is a broad category, encompassing anything from the removal of life support to increased pain medications.
The increasing prominence of palliative care in the past decade is a marker of change in medical thinking towards a more holistic model of care. Palliative methods are now initiated much earlier in treatment than they have been in previous years and are starting to be provided concurrently with curative methods. Comfort matters, and it matters throughout the entire experience of illness.
“In an ideal world, palliative care would be initiated when an individual is diagnosed with a life-limiting illness,” Jennings says.
The value of a “good death” is frequently discussed in health care literature and public media. Value lies not only in how we live, the arguments go, but also in how we die. A good death can mean a week on the beach with loved ones — it can also mean minimizing time spent breathing with a ventilator. The scope of end-of-life care is broad, but value can be created in both situations and all in between.
“There are only two things we can guarantee in life: birth and death,” Jennings says. “The processes of being born and dying are dynamic and unique experiences that deserve equivalent amounts of respect, care, compassion and love.”
“Death has the potential to be a beautiful experience.”
Jennings chooses to attend patient funerals — she says they keep her humble.
“I get to share grief, see an individual’s beginning, middle and end, and see how many people were impacted by their life.”
The most crucial factors in a smooth transition between levels of care are time, information, and communication. Martin says she’s seen physicians give families three to seven days to process information in the smoother transitions she has participated in.
“Lack of time is the worst thing that can happen,” Martin says. “Resistant family members need to be able to ask questions. You need to take any and all questions. You need lots of people to interact with resistant family members and provide consistent information over those days.”
When a transition is abrupt, key players feel they are letting their loved ones down. Family meetings, multiple conversations with care providers, and openness to questions are all necessary.
“(Relatives) feel they are letting their loved one die … They need lots of information about the pathophysiology of what is going on,” Martin says.
Second-year nursing student Olivia Roth says she most likely will attend the funerals of her patients.
“Attending funerals will allow me to grieve, and make the process feel full circle,” says Roth.
Roth had an “eye-opening” experience caring for a palliative patient in her first year.
“It really transformed the way I thought about nursing … It was hard for me to understand that switching from curative to comfort measures would allow her to die with dignity,”Roth says.
Palliative care can also be provided in final moments when an individual is dying suddenly, or after a short period of illness.
When a patient dies suddenly, or without a period of anticipation by the family, there are greater feelings of loss than when a death is foreseen. Family members and other loved ones experience increased stress and higher rates of morbidity in the two years following a sudden death.
Loved ones sometimes turn to requests for potentially inappropriate treatment. Potentially inappropriate treatments are those that may have a small chance of treating the patients, but ethical considerations justify not providing the treatment. Some examples of potentially inappropriate treatment could be extended intubation, or life support beyond a reasonable timeframe.
Responding to requests for potentially inappropriate treatment can create moral, ethical, and legal dilemmas for health care professionals. Potentially inappropriate treatment can include ICU stays when prognosis is poor. Intensive care unit stays are costly in terms of dollars as well as discomfort, and can cause potentially traumatic experiences. Forced intubation, intravenous and arterial lines, time spent breathing on a ventilator, and decreased ability to communicate all add to the dramatically uncomfortable experience of an ICU stay.
Finances are also considered. Health care professionals never hope to have a conversation regarding the ethical and financial benefit of keeping somebody’s loved one on life support, but public dollars are sometimes a factor to be considered in medical decision making.
“It’s important to consider resources,” Martin says of one of the hardest conversations professionals and families face. “Access to intensive care beds, nursing care, ventilators, medications … It’s all very expensive.”
Many health authorities have developed policies and timelines to facilitate transitions from curative to palliative care, and the denial of requests for potentially inappropriate care. One significant aspect of the grief experience can be anger towards professionals, but evidenced-based, health authority-wide timelines can lessen feelings of anger towards and abandonment by the health care team.
Along with the families of patients, health care professionals can also walk away from end-of-life experiences with pain and grief.
“It’s exhausting, both emotionally and physically,” Martin says. “But when (the transition) goes well, it’s one of the most satisfying experiences you can have. You feel like you’ve made a difference.”
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