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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:

Jane (not her real name), a 66 year-old woman with advanced COPD, has been hospitalized 5 times in the last six months for shortness of breath. During the current admission, she has been anxious, tearful, and stated to her nurse “I don’t know if it’s worth it anymore.” Nursing staff suggested a palliative care consultation to assist with managing Jane’s symptoms.

During her initial meeting with the palliative care team, Jane reported that she sees herself “going down hill” and is frightened of dying, specifically of suffocating. The palliative care team reviewed Jane’s recent clinical course and current medical regimen with her primary team and the other consulting teams. Given her persistent symptoms despite maximal therapy for her COPD, the palliative care team suggested a trial of opioids and benzodiazepines to manage her persistent dyspnea and associated anxiety.

Jane began taking:

oxycodone 5 mg every 4 hrs RTC (round the clock) for dyspnea
oxycodone 5mg q2 hr prn (as needed) for dyspnea
lorazepam 0.5 mg every 6hr for anxiety

and noted significant improvement. A fan was placed in her room and she continued on supplemental oxygen. A behavioral medicine specialist met with Jane and taught her relaxation techniques to use when her breathing was bothersome. With improvement in her shortness of breath, anxiety, and mood, Jane began to work with members of the palliative care team and her primary physician, as well as with representatives from social work and pastoral care, to clarify her overall goals and plans for the future.

Discussion:

Dyspnea is a commonly feared symptom in patients with advanced diseases affecting the lungs. Careful assessment, based on the patient’s subjective symptoms, and a thorough history and physical examination, guide management. Identifying and treating the underlying cause of the shortness of breath (pulmonary edema, bronchospasm, pleural effusion, etc.) generally provides the most effective relief. If treating the underlying cause is not possible or practical, efforts to manage the symptom itself are essential.

Oxygen, opioids, and benzodiazepines, as well as non-pharmacological interventions, represent the main strategies for controlling dyspnea. Opioids, often in lower doses than used for pain, reliably relieve dyspnea. All opioids are effective for managing dyspnea, though morphine is often used because of its low cost and ease of titration. Clinicians often fear respiratory depression when using opioids to control dyspnea, but they can be used safely and effectively when titrated carefully and followed closely. Sedation occurs well before respiratory depression and can signal a need for dose adjustment or more cautious titration.

Benzodiazepines can be safely added to opioid therapy to manage co-existing anxiety, starting at low doses and titrating to effect. Simple relaxation techniques can be easily mastered by patients and can provide a sense of control over distressing symptoms. Fresh air from an open window or fan can also provide significant relief. Patients and families should be reassured that dyspnea can be effectively controlled with the modalities discussed above.

References:

1. Luce J, Luce J. Management of dyspnea in patients with far-advanced lung disease: “Once I lose it, it’s kind of hard to catch it…” JAMA 2001: 185:1331- 1337. doi:10.1001/jama.285.10.1331

2. Emanuel L, von Gunten C, Ferris F. Education for Physicians on End-of-Life Care (EPEC) Module 10: Common Physical Symptoms. American Medical Association, Chicago: 1999.

*Historical Cases are presented intermittently to allow for twice monthly publication on the blog.
**Slight editorial changes were made for improved readability.