A 52 year-old African-American male inmate with Class B2 AIDS (CD4 cell count 421, HIV RNA 5,790) was diagnosed with widely metastatic non-small cell carcinoma of the lung. He is currently taking multivitamins, citalopram (Celexa), and doxepin. He is being followed for depression by the psychiatrist at the prison. The patient was seen by a community oncologist who explained treatment options and the prognosis. The inmate decided that he does not want chemotherapy and wishes to be DNAR (Do Not Attempt Resuscitation). He is very concerned about pain and wants to be assured that he will not suffer. The patient still has five years left of a six-year prison term and is unlikely to get early release. The patient has been a devout Christian for the past year.
Although this patient has HIV infection, his cancer is what limits his life expectancy. Patients with Stage IV lung cancer have a median survival rate of less than four months. The inter-quartile range on this estimate is relatively small, suggesting that this man is unlikely to survive more than six months.
The primary issues for this patient appear to be his possible depressive symptoms and concern about pain management. The first issue I will address is this patient's history of depression. It may be argued that depression can adversely influence a person's treatment decisions, and there is some evidence that depressed patients are more likely to choose to forego life-sustaining treatments.1 However, just because someone is depressed does not mean that he or she is not competent to make treatment decisions. I would recommend that the primary care clinician and psychiatrist assess this patient's competency to make decisions. If they deem him competent, his wishes should be respected. Since his depression may respond to treatment, his preferences for palliative care should be reassessed from time to time. Data from the SUPPORT study suggest that when patients have a decrease in depressive symptoms, they are more likely to accept life-prolonging treatments.2
The second issue is the patient's concern about pain. Incarcerated patients often become concerned about inadequate pain treatment, especially since their complaints may be viewed with distrust by health care providers. A recent study showed that pain is an important concern among patients with HIV infection, particularly those with a history of drug addiction.3 Pain is a common symptom among patients with advanced AIDS4 and as many as two-thirds of these patients describe moderate-to-severe or constant pain.5
Do you think consulting another oncologist is in order?
Chemotherapy for widely metastatic lung cancer is not curative and the effect on duration of survival is minimal. However, recent advances in chemotherapy and current regimens that are much less toxic than they were several years ago make it a worthwhile option to consider. After initiating palliative care and reassuring the patient that his pain will be treated and that his treatment preferences will be respected, it would be reasonable for the clinician to readdress the option of palliative chemotherapy and ask the patient if he is interested in discussing this option with another oncologist.
When should end-of-life issues be discussed and how?
It is impossible to be prescriptive about the "right" time to discuss palliative and end-of-life care. Often, clinicians wait until they have decided that life-sustaining treatments are no longer indicated before they broach the subject of palliative and end-of-life care with patients or their families. Studies suggest that clinicians are waiting for patients to bring it up, while patients are waiting for clinicians to do so. In short, raise the subject early, and revisit it on a regular basis.
Because discussing palliative care with patients is an important part of providing high-quality care for patients with terminal illness, plan ahead with the same care that you give to other medical procedures. (1) Preparation: The clinician should review the patient's diagnoses, various treatment options, and likely prognosis with each type of treatment. It is important to know what has been communicated to the patient by other members of the health care team. It is also important to be familiar with the inmate's social support network, both in prison and in his community; (2) Location: This discussion should take place in a quiet and private room, safe from interruptions -- admittedly difficult in a correctional facility; (3) Participants: If possible, ask the patient who should be present and what he or she would like to discuss; and (4) Plan for what is likely to happen after the discussion.
During these discussions, it is important to discuss prognosis and how the illness will affect the patient in an honest and meaningful way. At the same time, it is important to avoid completely discouraging hope among patients or their significant others who want to remain hopeful.2, 7
First, review the treatment options and prognosis honestly and directly. Spend some time exploring feelings and listening to the patient's reactions about the discussion. It can be helpful for the clinician to repeat what the patient has said to show that the clinician is listening. It also allows a chance for the patient to correct any misunderstanding the clinician may have about what the patient said. It is important to tolerate silences. Sometimes, after what seems like a long silence, a patient will ask a particularly difficult question or express a difficult emotion.
It is important that the clinician make recommendations during the discussion. With increasing emphasis on patient autonomy and surrogate decision making, there may be a tendency for some clinicians to describe treatment options to a patient or significant other and then feel that they should not make a recommendation. On the contrary, it is important that clinicians offer their expertise to patients and their significant others, and part of this is offering sound recommendations.
Concluding the discussion, the clinician should summarize the major points and ask the patient if there are any questions. The clinician should then propose an appropriate follow-up plan. This often includes an appointment for a future meeting, and a way for the patient to get a message to the clinician if questions arise before the next meeting.
There are a number of issues unique to the correctional environment discussed in a recent publication from the HIV/AIDS Bureau of the Health Services and Resources Administration.8 For example, protecting an inmate's medical confidentiality can be difficult. Corrections officers may be involved in discussions with medical staff about patient care for security reasons. Also, the issue of advance directives is delicate in penal situations, where self-determination is, by definition, abridged. Care providers must be assured that a patient's decisions are voluntary regarding access to and withholding of life-sustaining treatment.
Is there anything that would make end-of-life discussions different given that the patient is African-American and a devout Christian?
Culture and ethnicity are important factors to consider in patient-clinician communication, especially when discussing palliative care. In several studies of people with AIDS, black and Hispanic persons were less likely to communicate with their primary care clinicians about end-of-life care than Caucasian gay or bisexual men.9-11 People of color with AIDS are more likely to report that they don't like to talk about end-of-life care and are more likely to worry that talking about death could bring death closer than are Caucasian patients with AIDS.12 Similarly, injection drug users and women with high-risk sexual partners are more likely to worry that talking about death it brings it closer.12 Caucasians are more likely to prefer a treatment approach that focuses on palliative care as opposed to extending life, and this association persists even after controlling for education, income and HIV risk behavior.13 While clinicians should be aware of the diversity of barriers that may exist for patients from different cultures and be willing to discuss these barriers openly with patients,12, 14 it is important to realize that statistical associations by race and ethnicity are not predictive of a particular individual's treatment preferences.
Some surveys suggest that many patients want to discuss spiritual or religious issues with their primary care clinicians.15 Recent reviews have suggested approaches that physicians can take in discussing these matters with their patients.16, 17 A clinician can ask the patient if there are aspects of his or her spirituality or religion that the patient feels the clinician should know about before providing medical care.
Is it possible to get a consult or assistance with end-of-life issues?
Palliative medicine specialists can help clinicians and patients decide on therapy goals and explain the available options for palliative treatments, including potential palliative benefits of therapies frequently not considered palliative, such as chemotherapy and antiretroviral therapy. Palliative medicine specialists help patients focus on what is most important to them, helping them find value and meaning as their lives come to a close.
For information specific to customs of various ethnic and cultural groups, see www.pallcare.asn.au/mc/mccontents.html.
Case presented by Stephen Tabet, M.D., M.P.H., Assistant Professor of Medicine, University of Washington, and Director, Northwest Correctional Medicine Education Program, NW AIDS Education and Training Center. Discussion and recommendations by J. Randall Curtis, M.D., M.P.H., Associate Professor of Medicine, Division of Pulmonary and Critical Care, University of Washington. Neither has anything to disclose.
A collaboration with the Northwest AIDS Education and Training Center, with Stephen Tabet, M.D., and Kate Willner, trainer.
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