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Case: Mrs. L was a 95 year old woman who was admitted to the acute care hospital from her nursing home with decreased mental status. She was found to have pneumonia, and though her infection improved with antibiotics, her mental status did not recover and she continued to be only slightly responsive to her family, unable to eat or interact On the sixth day of Mrs. L’s hospitalization, palliative medicine was consulted to help the family with decision-making. By the time the palliative care consultant saw the patient, a temporary feeding tube had been placed, and the family had reached consensus on a trial of artificial feeding to give her a chance to regain strength, though they acknowledged that her prognosis was poor.

The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. L’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. L’s death. The next night, the bedside nurse charted several times that Mrs. L was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 95 year old woman, tied down and denied treatment for her suffering.

Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.

Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. L’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.

Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering.
In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:

• Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
• Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
• Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
• Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.

In Mrs. L’s case, the consultant discussed the case with the interdisciplinary team, receiving support for her concerns. Despite fear of negative repercussions from the primary service, she called the patient’s son herself and gently explained the signs of suffering that Mrs. L was showing. He agreed that his mother should have low-dose morphine. The primary team added this order without any expressed objections to the consultant stepping over her boundaries. Mrs. L died a few days later.


References
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866.

2. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (free pdf)

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CASE:Mr. J was a 39 year-old white married male who came to the hospital for a tissue biopsy and was subsequently diagnosed with advanced adenocarcinoma of unknown primary origin. His disease had progressed to the point where the tumors could not be debulked. The previous week Mr. J had been working full time and leading a very active lifestyle, so his diagnosis and prognosis came as a shock to him and his family. The primary medical team consulted the Palliative Care Team (PCT) to assist with symptom management, discussion of treatment options and goals, and planning of end-of-life (EOL) care.

Once Mr. J became physically comfortable and accepting of his poor prognosis, he voiced concerns about how to talk to his 6 year-old son and 8 year-old daughter about his illness and likely death. The RN for the PCT provided Mr. J with books that aid parents in discussing death and dying with children, and the behavioral medicine specialist with the PCT assisted Mr. J in applying these materials to the conversation he would have with his children.

First, as a means of understanding each child’s developmental level, the behavioral medicine specialist asked Mr. J to simply talk about his two children – how they spent their time, what subjects were they good at in school, and what, if any, exposure they had to the death of a loved one or pet. This discussion naturally led into Mr. J identifying words and concepts about illness and death that his children would understand. Mr. J decided he would say the following to his children, “Sometimes people get sick and the doctors can cure them. Sometimes people get sick and the doctors can’t cure them. The doctors don’t think they can cure me, but I am hoping for a miracle because I don’t ever want to leave you.”

Although his message was brief, Mr. J feared he would emotionally break down when having this conversation with his children. He wanted to be “strong” for them so that they would not be too frightened. To promote his sense of self-control Mr. J practiced his conversation with the behavioral medicine specialist who in turn coached him on breathing techniques that would help him stay in control of his emotions.

The practice helped, but Mr. J still feared that “we’ll all end up crying and that’s not going to any of us any good in the long run.” So then the behavioral medicine specialist worked with him on identifying specific ways in which he was a father to his children, e.g., he helped his children with their homework and he read to them every night before they went to bed. She suggested that after he gives them the bad news and answers their questions, Mr. J might reassure his children that he’s still going to help them with their homework and read to them every night.

DISCUSSION:
Young children who are informed of their parents’ terminal illness are less anxious than those who are not told , but many terminally ill parents are daunted by this emotionally stressful task. Deciding how to break the news to children is made more difficult when taking into account the developmental level of each child. Palliative Care Teams often have several books available that guide parents through the process of discussing death and dying with their children. Parents’ abilities to apply the information in these books can be further enhanced with a session provided by the behavioral medicine consultant. The individual session allows parents to tailor their approach to their own families and to practice having and controlling very powerful feelings.

References
1. Rosenheim, E., Reicher, R. (1985). Informing children about a parent’s terminal illness. J Child Psychol Psychiatry Allied Disc. 26:995-998.

2. Siegel, K., Raveis, V., Karus, D. (1996). Pattern of communication with children when a parent has cancer. In L. Baider & L. Cooper (Eds) Cancer and the family, pp 109-128. John Wiley and Sons: New York.

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Case: During a weekly Palliative Care Consult meeting, it was discussed that if D, 53-year-old woman with congestive heart failure, did not receive a heart transplant within several weeks to a few months at the most, she would probably die. I felt led to visit her, even though she was not on my normal unit rounds. On the initial visit, D was welcoming when I stopped by her room. After introducing myself as a Protestant staff chaplain, I inquired about her pain. D told me how uncomfortable she was and how she felt so limited by her physical condition. When I asked how she was coping with any other areas of suffering in her life, her lips quivered and her eyes filled with tears as she told of the burdens in her soul…deep, personal stresses in her life that continued to that very day. She had tearfully vented for about an hour, as I reflectively listened and reassured her that every word was confidential and I was there for her to listen, if nothing else.

After hearing her life’s trials, it was important to let her know, as a chaplain and pastor representing Christ’s church, that God could help not only with the treatment of the pain in her heart but also with the trauma of her suffering soul. I prayed for her and the medical team that would work with her and those behind the scenes to care for her, to harvest the new heart and skillfully transplant it into her body; as well as for the opportunity to deal with some of the issues of suffering that were plaguing her. Thankfully, the issues that she was suffering from began to be addressed within her family as the real possibility of D’s death triggered the process of reconciliation. As those issues began to be resolved and forgiveness and harmony blessed her life, hope and new meaning for her life made the anticipated pain of transplant more tolerable. D was sent home with a VAD long enough to appreciate how some of the stress that existed in the home before had dissipated. Within 48 hours D was back in for her heart transplant.

Surgery went very well, and D was out of the ICU with few complications. Yet, once D was on a step-down unit and dealing with post-operative pain in her body and the anxiety and depression that ensues after transplantation, she was troubled by her years of living as a sufferer. It was reassuring when she made her suffering known.

Thankfully, the issues were addressed by those that contributed to her suffering within her family, and positive changes brought meaning back into her life. D did embrace her new life with meaning and purpose, and as she healed from the pain of the transplant, it was made bearable by the liberation from suffering.

This was a process that was not resolved as in our modern media. It was assisted in by others in the Palliative Care Team, the Transplant Team, Unit Staff, Pastoral Care, Providence, and, of vital importance, D’s family members who realized D’s mortality and took ownership of her suffering and their contribution to the dysfunction in their household.

In many of the rooms of the hospital are laminated Comparative Pain Scales with 1 being expressed as :) demonstrating No Pain to 10 being Unbearable/Excruciating Pain. Modern technology addresses this pain well. Suffering of the soul, mind, psyche, what ever terminology you are comfortable with, also needs to be addressed with awareness and compassion. Everyone should participate. According to Thomas R. Egnew, “Suffering arises from perceptions of a threat to the integrity of personhood, relates to the meaning patients ascribe to their illness experience, and is conveyed as an intensely personal narrative.”

While the medical community has established procedures, protocols, and treatment plans that factor in typical emotional responses, suffering is personal, individual and commonly expressed as a narrative that needs the freedom and respect to be presented and the dignity to be acted on to reestablish meaning and significance. Pastoral Care is one piece of the solution, but by far, not the only piece in total patient care.

References:

1. Mayo Clinic on Chronic Pain; Mayo Foundation for Medical Education and Research. Kensington Publishing Corp., NY, NY. 1999

2. Egne, TR. Annals of Family Medicine; Suffering, Meaning and Healing: Challenges of Contemporary Medicine. LICSW. Volume 7 No 2. March/April 2009

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Case:

Mr. C, a 68 year old widower with an implantable cardioverter-defibrillator (ICD) placed five years previously, was admitted to the hospital after his ICD discharged several times in one day. Each discharge was associated with severe pain, loss of consciousness, and heightened anxiety about experiencing future discharges. Evaluation of the ICD firing confirmed refractory ventricular tachyarrhythmias consistent with Mr. C.’s end-stage heart failure. Trials of anti-arrhythmic medications proved unsuccessful. The frequency of ICD discharges could not be reduced without deactivating the device (which would cause imminent death), yet leaving the ICD active would prolong Mr. C’s suffering.

When his primary medical team informed him about his medical condition and prognosis, Mr. C showed ambivalence about deactivating his ICD. He clearly stated to his health care team that he “did not want to live under these circumstances” and that “shutting off this pacemaker may be the best thing for me.” However, he did not like being left alone for fear his heart would stop and no one would be available to resuscitate him. His primary medical team consulted the Palliative Care Team (PCT) to discuss end-of-life options and goals with the patient and family. The PCT treated Mr. C’s anxiety with clonazepam and relaxation training, “supported” his ambivalence, and assisted with his discharge planning.

As the PCT continued working with Mr. C, it became apparent that Mr. C experienced tremendous remorse for “what I put my family through 20 years ago after my wife died.” Although his family openly stated that all was forgiven, Mr. C could not accept their reassurances – “I wish I could make it up to them.” The PCT initiated an intervention where Mr. C talked about his family members one at a time, and he described his happiest memory, what he appreciated, and what he loved about each one. His thoughts were written down, and the family was trained to continue the exercise until all family members were done. Mr. C was discharged with home hospice, and his family completed the PCT intervention at home. The day after Mr. C finished his individualized sentiments, he requested to have his ICD turned off. A representative from the ICD manufacturer came to Mr. C’s home and deactivated the ICD. Mr. C died two hours later in the comfort of his home and surrounded by his family.

Discussion:

ICDs are used to treat people at risk for sudden death due to ventricular tachycardia or ventricular fibrillation. They deliver an electrical charge to the myocardium during an arrhythmic event, and the “shock” allows the ventricle to resume a normal rhythm1. ICDs allow many people to enjoy a prolonged life without significant compromise to quality of life, but in cases of end-stage heart disease ICDs can cause significant physical suffering simply by doing their “job” - repeatedly normalizing arrhythmic events. Patient quality of life is further compromised by the severe anxiety associated with the fear of receiving a future shock2.

For patients with end-stage heart disease, deactivating the ICD can be a sound medical, ethical, and legal decision for them - albeit a difficult one. For Mr. C, his ambivalence about turning off his ICD was driven by his need for reconciliation with his family. Once this was achieved he calmly and peacefully made his decision to die. His case suggests that end-of-life decision making can be difficult for patients, and they may need time and guidance in completing their relationships with their loved ones before they can make the medical decision that is best for them.

ICDs can be deactivated in different ways depending on the urgency of the situation. In cases requiring immediate action (e.g., a patient is actively dying of end-stage cancer and his ICD fires causing the patient to go into convulsions), pacemaker magnets placed over the device deactivate it within seconds. In less urgent cases, the manufacturer and/or the electrophysiology service can assist with ICD deactivation. For patients at the end-of-life, turning off an ICD is similar to withdrawing a ventilator: the patient (or surrogate) has elected for comfort measures in lieu of aggressive medical care.

References:

1. Braun, TC, Hagen, NA, Hatfield, RE, Wyse, DG (1999). Cardiac pacemakers and implantable defibrillators in terminal care. Journal of Pain and Symptom Management, 18, 126-131. (No open access PDF)

2. Dunbar, SB, Warner, CD, Purcell, JA (1993). Internal cardioverter debrillator device discharge: Experiences of patients and family members. Heart Lung, 22, 494-501. (Open access PDF)

3. Quill, TE (1996). A midwife through the dying process: stories of healing and hard choices at the end of life. Baltimore, MD: Johns Hopkins University Press.