BWH Clinical Ethics Case Review, a monthly newsletter, is published by the BWH Office of Clinical Ethics. Each issue highlights a BWH case that posed an ethical problem for a patient, family members and/or caregivers, leading to an ethics consultation and BWH Ethics Committee discussion. Please note that because cases are based on actual ethics consultations, some details may have been altered in order to protect patient privacy and confidentiality.
How Do We Respond to a Family’s Wish to Withhold a Patient’s Pain Medication?
This issue of BWH Clinical Ethics Case Review highlights a case in which a family member refused to let the care team administer adequate pain medication to a patient who lacked decision-making capacity.
The patient was admitted to the intensive care unit with end-stage cancer. He was in considerable pain, as evidenced by his own account of discomfort, as well as his grimaces, calling out when touched and through other nonverbal signals. The patient and his wife had a close and loving relationship. She was clearly devoted to him and spent her days by his bedside.
Early in the patient’s hospitalization, he willingly accepted pain treatment, although his wife sometimes tried to talk him out of it. As time passed, the patient’s mental status declined, and the care team determined that he lacked decisional capacity. His wife was his designated health care proxy agent and assumed responsibility for medical decisions.
Despite the patient’s obvious distress, the wife refused to let the care team administer adequate pain medication to her husband. She gave various reasons for declining it. One was her concern about the sedative side effects – she cherished her husband’s company and wanted him to be alert and able to interact with her. Another was her strong religious faith, which led her to believe that God wouldn’t let her husband die.
Caregivers at the bedside were distressed by the patient’s suffering and the wife’s reluctance to treat it. The care team requested an ethics consultation to address the wife’s refusal of pain medication and to provide guidance for the staff.
There is consensus in our society that patients have a right to pain relief and clinicians have a corollary ethical obligation to treat pain. An adult patient may choose to cede this right for various reasons. Some may believe pain to have a redemptive quality; for others, personal, religious or cultural beliefs may require that pain be experienced in all its intensity (Blinderman 2012). In such cases, the patient’s right to refuse unwanted medical interventions may override the clinician’s duty to treat the pain.
When a patient has lost decisional capacity, the surrogate does not have the same authority to refuse pain treatment on the patient’s behalf. Under Massachusetts law, clinical judgment about the patient’s need for pain relief takes precedence over conflicting surrogate requests. The Health Care Proxies statute specifically states: “Nothing in this chapter [granting authority to the patient’s agent] shall preclude any medical procedure deemed necessary by the attending physician to provide comfort care or pain alleviation” (M.G.L. c. 201D, s.13).
Legal dictates and ethical principles are aligned in this regard. As a rule, a surrogate who attempts to refuse pain medication for the treatment of severe cancer pain, even if the medication is associated with some degree of sedation, is not acting in the patient’s best interests (Blinderman 2012).
If, however, the patient had clearly articulated before losing decisional capacity the desire not to receive pain medication, a surrogate wishing to uphold the patient’s autonomy may request that pain medication be withheld. The medical team should only honor such request if there is clear evidence that it conforms with the patient’s previously expressed wishes (Blinderman 2012).
Despite strong legal and ethical support for clinicians to provide pain relief over surrogate objections, the reality at the bedside may be more complex. As observed during the BWH Ethics Committee discussion of this case, it is one thing to know on an intellectual level what should be done, but another to manage the expectations of family members in the room.
Resistance to the use of pain medication may be deeply entrenched in the family’s worldview. They may worry about the side effects of strong opioids, which can include sedation, nausea and respiratory depression. They may also believe that opioids hasten death or that their use signals that the medical team has “given up” on the patient (Blinderman 2012).
Strongly held religious convictions may also explain the family’s reluctance to use pain medication. For example, members of some Christian denominations subscribe to faith healing, believing in the power of prayer and ritual to elicit divine intervention. Followers of these faiths may question the validity of medical science, trusting more in God’s ability to work a miracle and effect a cure.
In other cases, attitudes toward decision makers may differ. Some cultures place less value on individual patient autonomy, preferring instead familycentered decisions that consider the impact on the whole family unit.
Individuals from these cultures may believe that the patient would willingly forego sedating drugs if staying awake and interactive would help loved ones cope with grief and bereavement. Acknowledging and addressing the family’s concerns, while at the same time adequately managing the patient’s pain, is the challenge in these cases. Some recommendations are: Clear up misconceptions about the medications, e.g., by explaining that opioids do not hasten death and that their use does not mean the team is giving up on the patient.
Assure the family that every effort will be made to use the lowest dosage possible to control the patient’s pain.
Offer the services of a medical/cultural interpreter and spiritual care as appropriate.
Ensure that surrogates understand the limitations of their authority to withhold pain relief under Massachusetts law.
Enlist the BWH Ethics Service early in the process to bring the stakeholders together, help open channels of communication and provide support to staff.
During the ethics consultation in this case, the medical team recognized that the wife’s request to withhold pain medication came from a place of love, but explained that the patient was in severe pain and they were obligated to address it. The team reassured her they would use the least-sedating dosage of medication possible to manage the patient’s pain. There was effort to support the wife’s religious beliefs while at the same time suggesting that God’s domain and the medical domain worked independently of one another.
After ongoing discussion, the wife said she understood the patient was dying and accepted the team’s recommendations for comfort care.
Supporting Literature and Law Blinderman, C. “Do Surrogates Have a Right to Refuse Pain Medications for Incompetent Patients?” J Pain Symptom Manage 2012:43(2);299-305.
Health Care Proxies, M.G.L. c. 201D, s. 13.
We welcome your feedback about BWH Clinical Ethics Case Review! Please email your questions and/or comments to BWHEthicsService@partners.org. To learn more about ethics consults, visit the Office of Clinical Ethics website.
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