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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:

You are asked to see Mrs. RT, a 44-year old woman with end-stage COPD. She was admitted to inpatient hospice with increased anxiety, hopelessness, and pain “all over.” She says she is tired of being sick and exhausted, and wants to be “put to sleep.” She has heard about “terminal sedation” and is angry it hasn’t been offered. She lives with her husband and adult children who work full-time and is upset they can’t all stay home with her. She experiences dyspnea with activity, and uses a wheelchair, but can independently transfer to bed and toilet. Your exam reveals she is awake and alert, neither delirious by the confusion assessment score (CAM), nor suicidal. She is cachectic, tachypnic, and has generalized muscle atrophy. She lacks signs of infection or localized pain. You estimate her prognosis in months. She takes medications erratically for symptom control.

What is Palliative Sedation Therapy (PST)?

Patients and families sometimes have heard or been told about “terminal sedation,” but it is a frequently misunderstood term and therapy. The term “terminal sedation” suggests the goal of the therapy is hastening death for terminally ill patients, when in fact the goal is symptom relief. Therefore, the term “palliative sedation therapy (PST)” is much preferred since the goal of PST is relief from intolerable and untreatable symptoms, not shortening a patient’s life. An international panel of palliative care experts recently reviewed the medical literature on PST and published their recommendations for standardizing our understanding of this therapy1. They recommend the following definition: “Palliative sedation therapy is the use of specific sedative medications to relieve intolerable suffering from refractory symptoms by a reduction in patient consciousness.” They emphasize that palliative sedation is distinct from euthanasia while acknowledging lively debate on this issue.

The panel’s position is based on their assertion that hastening a terminally ill patient’s death is not the goal of PST. Other points of difference between PST and euthanasia are the principle of titration to comfort rather than to death, and PST’s reversibility.

What are refractory symptoms?

Refractory symptoms are considered symptoms for which all possible treatments have failed. A patient experiencing refractory symptoms must be differentiated from a patient who has symptoms that are difficult to treat. Refractory symptoms are symptoms that the palliative care physician and team determine cannot safely be relieved by invasive or noninvasive interventions. Expert panel members recommend Cherney’s definition of refractory symptoms: “Refractory symptoms are symptoms for which all possible treatment has failed, or it is estimated that no other therapies exist within the patient’s time-frame or tolerable risk-benefit ratio.”

When is PST considered?

PST is considered for patients with refractory symptoms only after discussions with the patient and/or family, the caregiving team, and the palliative care expert. The most frequent reasons for PST have been refractory delirium or restlessness, dyspnea, pain, and nausea/vomiting. The use of PST or psychological or existential distress is rare, and initiated only under exceptional circumstances. PST is considered only in the last hours to days of life.

Experts recommend a systematic and inclusive process to determine if PST appropriate, which includes the patient, if possible, designated surrogate and caregivers, and addresses the patient’s values, beliefs, and goals. If PST is chosen, then the specific intervention is discussed and reviewed, instituted, and carefully monitored. Decisions about nutrition and hydration are discussed separately from the decision to offer PST.

Medications used for PST include benzodiazepines (usually midazolam), except for delirious patients, phenobarbital, or propofol. Opioids are not recommended for PST because even high doses may not result in sedation.

Since the aim of PST is the relief of refractory symptoms, doses of sedatives are carefully chosen to relieve distress by reducing a patient’s level of consciousness and are not excessive. The degree of sedation can vary from superficial to deep sedation. Initial doses of sedatives should be small enough to allow a patient to communicate periodically.

Refractory symptoms may respond to temporary sedation, since a patient’s ability to tolerate symptoms may be improved following rest provided by sedation. Experts identify three levels of continuous sedation. With mild sedation, the patient is awake, but has a lowered level of consciousness. Moderate sedation results in stupor, so that the patient is asleep, but can be awakened to communicate briefly. With deep PST, the patient is unconscious and unresponsive. PST is frequently monitored and assessed, with attention to the needs and goals of both patient and family.

Back to the Case:

You convene a meeting with the patient, her family, and the palliative care team. After asking open-ended questions and listening to concerns, you offer information about PST but say that you think her symptoms can be treated. You offer medication changes including around the- clock rather than as needed opioids for relief of dyspnea and pain, and a comprehensive treatment plan for her anxiety and depression. Her family finds ways for her to be less isolated, and the hospice team offers additional services and frequent monitoring. Although she is skeptical, she is willing to consider these options as possibly improving the quality of her life.

References:
1. De Graeff A. Dean M: Palliative Sedation Therapy in the Last Weeks of Life: A Literature Review and Recommendation for Standards. Journal of Palliative Medicine 2007; Vol10 (1); 67-84.

2. Cherny NI. Portenoy RK: Sedation in the management of refractory symptoms: guidelines for evaluation and treatment. Journal of Palliative Care 1994;10;31-38.

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Case:

Mr. L.O. was an elderly Russian immigrant to Canada, admitted to the Palliative Care Unit of a Canadian hospital with advanced rectal cancer. When L.O. was first presented to the multidisciplinary team, his major problems were identified as persistent rectal pain and anxiety. The initial workup of the pain suggested a neuropathic component, and adjustments were made to L.O.’s medications. His complaints of pain and anxiety persisted over the next several days.

L.O. then began to experience terrifying nightmares. Even during the day, when he was awake, he would have what he called “flashes” of frightening imagery, but the nightmares were the worst. L.O. was so fearful of them that he resisted falling asleep as much as he could. The images were horrific, often violent, with L.O. sometimes being the victim of the violence, sometimes the perpetrator. A CT scan was ordered to investigate the possibility of brain metastases as a contributing factor.

At the same time, the attending palliative care physician had a long interview with L.O., in which they explored the content of the nightmares in depth. L.O. was an amateur artist, and the physician suggested that he might sketch the images in his dreams, or, if not the exact images, some rendering of how they made him feel. L.O. did this. Subsequent conversations revealed that L.O. was estranged from his children; the main reason that he needed to be in the Palliative Care Unit was that none of his children cared enough about him to support him while he lived at home. L.O.’s sketches showed a small figure—himself—cowering at the bottom of a deep pit, with another figure standing far above, looking down.

The physician suggested that L.O., who had become physically well enough for a weekend pass, bring some of his previous paintings back with him to the Palliative Care Unit. Within a few days, the sound of hammering could be heard from L.O’s room. He was hanging his pictures, 15 or 20 in all. Most were landscapes, but there were also a portrait of a lovely young woman, and a winter scene, all in black and silvery white, of a snow- and ice-lined brook leading into a dark woods. The next morning L.O. reported that he had dreamed of eating a chicken dinner.

Discussion:

Two features of this case are striking. The first is the necessity of combining medical and psychosocial approaches to L.O.’s nightmares and overwhelming anxiety. Both the CT scan and several psychoactive medications were appropriate and helpful. But it was the in-depth exploration of the content of the imagery, and even more, the suggestion that L.O. use his art to capture his emotional state in drawings, that appeared to unlock the insights and emotions that lay beneath the anxiety and terror. The physician succeeded in helping L.O. find a language to express himself more effectively and concretely than he had been able to do at a purely verbal level. The physician found a form of expression that “fit” the patient, even though that form was somewhat unconventional.

The second feature concerns the possibility of creating a living space in the Palliative Care Unit where L.O. could work his way to a feeling of peace and safety, despite his estrangement. This use of the inpatient palliative care service would almost certainly be impossible in the United States, with our minimal lengths of stay and our restrictive utilization review requirements. L.O. died in this Canadian palliative care unit many days after his physical and emotional symptoms had been brought firmly under control. But the inpatient environment remained critical to his spiritual well-being. Even though the Canadian health care system faces some of the same economic pressures as that in the U.S., the possibility still exists there for more flexibility to respond to the broadest range of patient or family need, compared to the limits imposed by hospice and palliative care financing in the U.S.

References:

1. Pratt A, Wood M (eds). Art Therapy in Palliative Care. London: Routledge, 1998.

2. Lynn J. Serving patients who may die soon and their families: The role of hospice and other services. JAMA, 2001, 285:925-932. (No open access pdf)

3. Raphael C, Ahrens J, Fowler N. Financing end-of-life care in the USA. Journal of the Royal Society of Medicine, 2001, 94:458-461. (Open access PDF avail from Journal and PubMed Central)

(CS: Minor formatting edits for readability)