We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place.

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We hope that this will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

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Case #21 (see responses below)

Ed was a 49-year-old resident who was a quadriplegic and had resided in a skilled nursing facility for several years. During that time, the resident used a specially equipped, motorized wheelchair that allowed him to travel around the building and go outside to smoke. As a result, many staff throughout the building had become friends with him. Ed developed several health complications leading to multiple hospitalizations over the past year. Since his most recent hospitalization Ed had not recovered to his previous level of functioning and had to stay in bed with oxygen support. Ed had no cognitive impairment and had full decision-making capacity.

The nurse practitioner working with Ed talked to him about his situation and explained the healthcare choices available, including palliative care. After a good deal of time in conversation with his doctor, the nurse practitioner and his family, Ed came to the conclusion that more hospitalizations would not improve his quality of life. Ed chose palliative care and no more hospitalizations.

Ed’s condition continued to decline and at times he became anxious and wanted someone to stay with him constantly. Ed had some family support but no one close enough to stay around the clock. Nursing and environmental services staff voiced their concern and made a pastoral care referral. The chaplain visited at least twice and offered spiritual support. The resident, who was Roman Catholic, was appreciative of chaplain visits but also indicated that his spiritual needs were being met through regular visits from priests and lay visitors from the local Catholic parish. The chaplain arranged for regular (twice weekly) visits from “Care Team,” volunteers who are available to visit end-of-life care residents.

During the last day of Ed’s life, his son stayed with him constantly. After the resident died, the nurse practitioner learned that a group of nurses who disagreed with Ed ’s decision not to be hospitalized had gone into his room the night before he died and tried to persuade him to go to the hospital. She came to the chaplain with her concerns about the ethical and spiritual boundaries that were crossed in this situation.

What ethical issues are in conflict in this case?

What emotional/spiritual issues are present in the persons involved in this case and how could they be addressed?

What education/training needs to be provided to help staff understand their role and maintain appropriate boundaries in caring for persons who choose palliative care over hospitalization?

What are some caregiving dynamics unique to residential, long-term care settings that might help one understand and respond to this situation?

Responses:

This is a very brief outline of a story that might have produced more clarity with more detail. The story appears to be a clear example of failure to respect patient autonomy and self determination. The key people who needed to be involved were involved in the making of this decision about his plan of care. There are no legal or social mores violations here in the greater society. I wonder if there was not a perception of there being a violation or at least a conflict in a smaller segment of Ed's social or religious system.

This story matches many others told about last minute stands taken by persons seeking to act out of their own personal moral and religious convictions to "prevent wrongful death at all cost." You mentioned that the patient was Roman Catholic. We know that his church struggles with issues related to withdrawal and withholding of life sustaining care as evidenced by Pope John Paul's comment about Teri Schiavo and the position he held about the quality of his own physically compromised life.

My sense is that this last minute stand was disturbing on some level to the perception of peace and harmony as this poor man came to the end of his life (which is a major goal of palliative care.) It might well have been destructive. The skilled nursing facility needs to have clear policy that prohibits such action from staff, and I would recommend disciplinary action for those who participated in this if that policy exists. This story does not suggest to me that the breech of patient/staff boundaries can be attributed to familiarity with the patient because of their long term care of him. Each could have spoken to him about their concerns in the course of their day's work. This "group of nurses who come in the night to persuade" sounds more issues oriented than familial concern for the patient. This, along with other forms of staff impositions (including proselytization) is not to be tolerated. Chaplains have a role to model respect for patient values, and they have a role by upholding corporate policy and the quality assurance efforts of their human resources department.

Stan Dunk, M.Div., BCC
Director of Pastoral Care
The Fort Hamilton Hospital
630 Eaton Avenue
Hamilton, OH 45013

The nurses in this case clearly crossed professional and ethical boundaries, but because the setting is long-term care, I ask that the fourth question, about the care giving dynamics unique to residential, long-term care, would be carefully considered before proceeding to any disciplinary action.

Ed had been a resident in this facility for several years. He was known throughout the facility and was considered a friend; likely Ed considered many on staff as friends too.

He was young, possibly close in age to some of the nurses; he had a (young adult?) son. Unlike many residents, Ed had “no cognitive impairments.”

Finally, staff had witnessed episodes of anxiety and knew that Ed wanted someone to stay with him – staff would read fear.

Each one of these factors made it hard for some staff to - in their perception – “just let him die.”

These staff members were involved personally; they knew and cared about this resident. Note that the referral came from nursing and environmental services staff – the very ones who would have been in Ed’s room daily. Some of the nurses may have spoken previously with Ed about their misgivings. Some may have felt silenced, concerned that the final decisions about "their” resident were made without hearing their concerns. Working primarily in a long term care setting, I know that sometimes there are tears in a nursing home when a resident dies. If so, the tears are for a human being – maybe even a friend – who died, not for the defeat of an ideological stand.

Even though we disapprove of the nurses’ action in this case, as chaplains we must be willing and ready to hear the questions and qualms that staff struggle with some end of life decisions. Of course grave concerns about foregoing medical treatment are not limited to Roman Catholics: I hear them from staff and families of various Protestant denominations as well as from those with no religious affiliation.

At the facility I serve, we are recognizing that in spite of numerous training and educational opportunities about end of life choices, there is still a huge amount of misunderstanding and misinformation circulating. Together the social workers, the nurse educator, and the chaplains are looking for ways to make staff more familiar with and respectful of the range of morally and ethically acceptable end of life choices. I believe, however, that first of all staff members need to feel safe voicing their concerns about end of life care and the ethical, religious, professional, and personal dilemmas involved for them. If they can’t bring these to the chaplain, who’re they gonna call?

Astuti Bijlefeld, M. Div
Staff chaplain
St. James Mercy Health
Hornell, NY

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