Palliative & Hospice Care in HIV/AIDS–A Community Care Perspective
A Clinical Viewpoint
William Johnson, MD
Bethsheba Johnson, MSN, CNS, GNP-BC
First described in 1981 as Gay Related Immune Deficiency (GRID), end stage Human Immunodeficiency Virus (HIV) infection or Acquired Immune Deficiency Syndrome (AIDS) has presented some of modern medicine’s greatest challenges and triumphs. Human immunodeficiency virus is the virus that causes AIDS. In the 1980s someone with the diagnosis of AIDS was not expected to live for more than two years. Medications at the time were geared toward management of opportunistic infections (infections that take the opportunity to attack the immune system when not working well), prophylaxis (prevention through antibiotics) of pneumocystis carinni pneumonia (a serious pneumonia known to persons with HIV), and symptom management.
Over the past two decades there have been tremendous advances in treatment of HIV infection with the advent of anti-HIV or highly active retroviral therapy (HAART) and improved treatments of opportunistic infections. Along with the advances in treatment there have been a remarkable decrease in deaths, hospitalizations, and disability from HIV. Despite these advances in medical therapy and increased life spans of persons living with AIDS, there remains a disproportional death rate of persons of African descent diagnosed with HIV. Persons of African descent not only lead the United States in the number of new cases of AIDS, accounting for more than 50% of all new cases, they also account for more than 50% of deaths from AIDS. 1
Yet people of African descent only comprise approximately 13% of the general population. Persons of African descent should not be considered a monolithic cultural or social community. Persons in this community include immigrants, such as Haitians, Jamaicans, Africans, and others who were not born in the US and may or may not be naturalized citizens, as well as the African Americans who trace their lineage to slaves or freeman of pre-Civil War America. And HIV/AIDS affects every economic and educational level.
The Centers for Disease Control and Prevention (CDC) also reports that AIDS remains the number one cause of death for men of African descent ages 25 to 44. 2 While these statistics remind us of the continued need for improved access, prevention, and advocacy, they also highlight the need for good palliative care.
Palliative care is comprised of multi-dimensional services that mitigate one’s transition from the “cradle to the grave.” It can include pain management, care, and concern for human suffering-physical and mental, and loss and bereavement. According to the World Health Organization, palliative care is defined as “the active total care of patients whose disease is not responsive to curative treatment. Palliative care
- affirms life and regards dying as a normal process,
- neither hastens nor postpones death,
- provides relief from pain and other distressing symptoms,
- integrates the psychosocial and spiritual aspects of patient care,
- offers a support system to help patients live as actively as possible until death,
- offers a support system to help the family cope during the patient’s illness and in their own bereavement.
The goal of palliative care is to achieve the best quality of life for persons who are living with diseases that are non-responsive to curative treatment, while offering support to family members and/or significant persons who are care providers.
Recent reports appear to confirm what HIV care providers have felt to be true-which is that low CD4 (an important immune system white blood cell) counts increase risk of death from not only AIDS and/or opportunistic infections but also from heart disease, malignancy, and liver disease. 3 This increase in death due to non-HIV diagnoses presents an added challenge to the HIV provider to not only treat HIV, but also to consider co-morbidities (such as hypertension and diabetes) in the prognosis of these patients’ health.
The primary care provider plays an important role in the community in recognizing this need and understanding the coalescence of medicine, spirituality, and social services. Care should be coordinated within a multidisciplinary team comprised of physician, nurse practitioner, case manager, substance abuse counselor, mental health counselor, pastoral care, and peer coordinator, such as similar teams at the Luck Care Center.
Background of the Luck Care Center
On the Southside of Chicago in the mid-1990s, there began to emerge startling numbers of HIV-positive people of African descent. This was especially alarming to the community of Roseland, located 13 miles S of the Loop of Chicago. Roseland was a neighborhood whose origin until the 1960’s was primarily of Dutch descent, an area of blue collar workers from the railroad, steel and automobile industries.
The area thrived into the 1960’s even with its newfound diversity from the migration of African Americans families to the area. However, when inflation hit in the 1970’s followed by the collapse of the aforementioned industries, it left this new migrant of community residents without stable employment.
The education system struggled, businesses left for the suburbs, community institutions that had helped residents in earlier times when the area was mostly white, had now abandoned it new Roseland residents. The outcome was the economic decline of a once thriving community. This also resulted in the flight of working class blue and white collar African Americans from the area. The end result ... a community broken shattered and forgotten. Sadly today, 70% of the residents are now on public assistance.
During the initial diagnosis in the late 1980’s most of the HIV positive persons were gay white men. However it became apparent that this horrific disease did not discriminate. The Centers for Disease Control and Prevention provided the following fact sheet on AIDS in 2004. 4
- African Americans accounted for 20,965 (49%) of the 42,514 estimated AIDS cases diagnosed in the United States (including US dependencies, possessions, and associated nations)].
- The rate of AIDS diagnoses for African American adults and adolescents was 10 times the rate for whites and almost 3 times the rate for Hispanics. The rate of AIDS diagnoses for African American women was 23 times the rate for white women. The rate of AIDS diagnoses for African American men was 8 times the rate for white men].
- The 178,233 African Americans living with AIDS in the United States accounted for 43% of all people in the United States living with AIDS].
- Of the 48 US children (younger than 13 years of age) who had a new AIDS diagnosis, 29 were African American].
- Since the beginning of the epidemic, African Americans have accounted for 379,278 (40%) of the estimated 944,306 AIDS cases diagnosed.
- From the beginning of the epidemic through December 2004, an estimated 201,045 African Americans with AIDS died.
AIDS hit the Roseland area like a thunderbolt! Fear of stigmas associated with the virus, denial and limited information from the onset has left the community of Roseland devastated. Although it is a community cloaked in plight, it is nonetheless a community and one that is in dire need of good quality care, education and support for its residents.
Sherry L. Luck, MD, an African American board-certified internal medicine physician, had a vision of providing care for HIV-positive patients and their families in this underserved area of Chicago. Through diligence and preservation in economically daunting times, Dr. Luck’s vision was realized. Dr. Luck was able to sustain an in-patient HIV clinic at Roseland Community Hospital through her own personal funds and from community fundraisers until the clinic received funding through the Ryan White Care Act. The Ryan White Care Act is federal funding for persons living with HIV who were uninsured. Dr. William A. Johnson became the medical director of the newly rededicated Luck Care Center after Dr. Luck’s sudden death in May 1999.
The Luck Care Center is a private not-for-profit HIV/AIDS clinic. The staff is 100% persons of African descent as well as the board of directors. The clinic provides HIV primary care to approximately 200 patients, of which 98% are of African descent.
Services include medical management of HIV and other illnesses, such as diabetes (sugar diabetes), hypertension (high blood pressure), mental health counseling, substance abuse counseling, nutrition counseling, prevention counseling for sexually transmitted infections, pastoral and bereavement care, massage and chiropractic therapy, case management, support groups, and peer education.
The Case Study: Part I
To put a face on HIV/AIDS, follows the history of a patient from the community.
Mrs. S, a 44-year-old woman of African descent, presented an AIDS diagnosis at the clinic in 2000. She is a professional woman working on the Southside of Chicago. Prior to this meeting, Mrs. S decided to visit a local hospital that was educating people to the threat of HIV in African American communities through a free HIV testing day. Although Mrs. S thought she had not engaged in high-risk behaviors, because she was married with five children, she decided to have the HIV test. Mrs. S’s test for HIV was repeatedly reported as positive. It was clear that Mrs. S was seething with anger when she was referred to the Luck clinic; she came in for her first visit in great psychological pain, frightened and spiritually wounded. Even in her anger she encouraged her husband to get tested and the outcome of his results was even more distressing. Her husband was not only HIV positive, he had AIDS. Both Mrs. S and her husband were full of despair and anger. Why me God? was the question she kept repeating out loud during her visits to the clinic.
The burden was too much; she lashed out at her husband in anger and demanded that he leave their home. He in turn suffered a mental breakdown and had to be placed in a locked psychiatric unit and placed on psychotropic medications.
When Mrs. S husband was later discharged on antidepressants and antipsychotics, Mrs. S reluctantly accepted him back into their home with the provision that he get HIV treatment. After he returned to work, a few months later Mr. S was fired from his job; this left Mrs. S as the sole provider for the family. It was very difficult for Mrs. S to come to the clinic for routine care, she herself was a medical professional and her fear was that she would run into people who knew her and suspect that she was seeking treatment. She was very afraid of the stigma of HIV and the possible discrimination by others and her church; these feelings brought on increased anguish and anxiety for Mrs. S. Social complications and privacy concerns are still very real in communities of color and oftentimes prevent patients from being tested and/or treated. Mr. and Mrs. S began to take antiretroviral (anti-HIV) medication. Mrs. S had HIV but no symptoms of the infections.
Even though the HIV infection was stable, Mrs. S did develop several problems over the course of her treatment that was not related to HIV. The first problem was a blood clot in her leg that caused a great deal of swelling and pain.
Pain and Persons of African Descent
Since the beginning of the HIV epidemic, clinical studies have documented a high prevalence of pain in patients with AIDS. 5 Numerous studies also have shown pain to be underreported and underrated. 6, 7
Pain in AIDS patients can be due to opportunistic infections (headaches from meningitis or abdominal pain from disseminated Mycobacterium avium Complex-a tuberculosis-like illness disease-from HIV itself as in neuropathy, medication related, or the effects of chronic debilitating illness.
The approach to treating AIDS-related pain is similar to any chronic debilitating illness. First and foremost a detailed and thorough history and physical is mandatory. An assessment of pain should include location, radiation, timing, quality, severity, aggravating factors, relieving factors, previous therapy, and impact on the activities of daily living. The pain assessment requires very good communication skills, active listening, observation, and knowledge of how pain is managed culturally. There are generational issues that providers should consider, for example, stoicism regarding pain is perhaps a factor that may inhibit patients from letting the provider know they are in pain. Elders of African descent may view pain as a way of life; to withstand it without complaining reflects strong character. Their spiritual and religious foundations contribute to their high tolerance for pain, which prayer can alleviate and “laying on of hands.”
Once a thorough assessment is done a treatment regimen can be established. Frequent documentation of pain assessment and reassessment of pain is essential. Pain assessment includes determining a pain rating. Using a 0 to 10 pain scale, with 10 being the worst pain experienced. Pain scores can then be compared to determine effectiveness of therapy.
Pain scores should be taken at each visit and recorded. Pain management of persons of African descent in the community clinic, with a large proportion of patients with substance abuse histories, requires a great deal of trust, patience, and documentation. Since pain is a very subjective experience, prior to therapy guidelines must be established and shared with the patient. Pain contracts which explain medication prescribed, the pharmacy to be used, how often medication can be refilled, and policy on lost or stolen prescriptions are often utilized and renewed annually.
Also, consultation with an addiction specialist if a patient is on methadone maintenance therapy is mandatory, if a patient is to start opiate therapy for pain control. Pain assessment includes a determination of the type of pain: muscular, bone, internal organ, or nerve pain. Muscular and bone pain occur as a result of tissue injury (somatic).
Pain from internal organs can result from stretching, distension, or inflammation of the internal organs of the body. This pain usually is well localized and may be described as sharp, dull, aching, throbbing, or gnawing in nature and typically include bones, joints, and soft tissues.
Nerve pain occurs as a result of injury to peripheral nerves or central nervous system structures. Nerve pain may be described as burning, shooting, tingling, stabbing, or like a vise or electric shock and affects the brain, central nervous system, nerve plexi, nerve roots, and peripheral nerves.
A full assessment of pain is important in determining the correct therapy. One set of accepted and excellent guidelines are the World Health Organization’s, which state that treating pain with a rating of 1 to 3 starts with acetaminophen or nonsteroidal anti-inflammatory drugs (NSAID); 4 to 6, with narcotics combined with acetaminophen; and ratings 7 to 10 requires strong narcotics.
Examples of strong narcotics include morphine and oxycodone. After determining appropriate medication and dosage, reassessment of pain is essential at every visit. Pain therapy also depends of types of pain. Muscle and bone pain most often responds to NSAID and narcotics, whereas nerve pain often requires narcotics along with adjunctive therapy of tricyclic antidepressant, anticonvulsants, and steroids.
HIV neuropathy (nerve pain) poses several challenges to the HIV provider and can be difficult to control. This pain is due to peripheral nerve injury caused by HIV or medication used to treat HIV infection-particularly the thymidine analogue nucleoside reverse transcriptase inhibitors (didanosine, stavudine, and zalcitabine).
Pain is described as numbness, burning, and tingling. This pain is oftentimes severe and constant. HIV neuropathy is a significant cause of disability in HIV patients with advanced disease. Drug therapy of HIV neuropathy should start with acetaminophen or NSIAD. Many patients will require acetaminophen with codeine or acetaminophen with hydrocodone for relief.
Adjuvant therapy with gabapentin has proven to be highly effective and shows superiority to tricyclic antidepressants. 8 Neuropathic pain is chronic and largely irreversible and requires chronic therapy often using multiple medications alternative therapies such as acupuncture.
The Case Study: Part II
Although Mrs. S suffered in pain from the blood clot she did not want to have her leg examined by another physician and she refused diagnostic tests because she was afraid that once it was revealed that she was HIV positive, her treatment and the physician’s perception of her would change. At this time, Mr. and Mrs. S had not disclosed to anyone outside of their families that they were both HIV positive.
Symptoms other than pain in patients with late-stage HIV disease can be managed successfully in a community-based practice. Some of the common symptoms experienced include constitutional symptoms (fatigue/weakness, anorexia, and fevers), gastrointestinal (nausea/vomiting, diarrhea, and constipation), respiratory (dyspnea, cough, increased oral secretions), dermatologic (skin rash, pruritis, and decubiti), and neuropsychiatric (delirium, dementia, agitation, and depression).
Causes of fatigue and weakness are numerous in patients with AIDS and often treatable. Patients with long term anemia (low blood) secondary to renal failure, medications, and HIV often complain of weakness and fatigue. Treatment of anemia with epoetin once weekly, and transfusion for hemoglobin of less than eight are accepted and effective therapies. Other efforts also include discontinuation of medications which cause anemia, i.e., AZT. Fatigue secondary to opportunistic infections and AIDS may respond to stimulants such as methylphenindine, if the infection is going untreated.
Case Study: Part III
Mrs. S developed anemia, which at first was thought, to be related to her HIV medication. She was complaining of fatigue and weakness, which was making it very difficult for her to work. Mrs. S was taken off of her HIV medication to see if that was the cause of her anemia and put on iron and epoetin once weekly in an attempt to increase her red blood cells (hemoglobin).
Unfortunately, that therapy had no effect, so she was referred to a hematologist (physician who specializes in blood disorders), but she refused to go because she did not want to disclose that she was HIV positive. Her symptoms were so severe that she became short-of-breath and could hardly get out of the bed to care for her children, nor could she go to work. She had to be admitted to the hospital where she received multiple blood transfusions, but she still did not disclose her HIV status to the physician.
At the Luck Care Center considerable time is spent discussing with the patients the importance of disclosure of their HIV status to sexual partners, physicians, dentists, etc. The Luck Center provides ongoing support in group settings and privately if that is the patient’s preference.
Gastrointestinal symptoms are varied and common. First steps are assessment of symptoms. Difficulty swallowing is most often secondary to yeast infection in the throat and esophagus and most often can be treated with oral flucanozole. Also canker sores (sores in the mouth) can be a cause of difficulty swallowing and can be treated with corticosteroids like prednisone. Nausea and vomiting is commonly caused by oral medication, and therefore all medications should be reviewed and unnecessary medications stopped. Other treatments include metoclopramide, phenothiazines, and antacids. Phenothiazines are particularly useful since they can be given by multiple routes (oral, rectal, or intravenously). 9
Respiratory symptoms are common in the late stages of AIDS. Pneumonia (community acquired, pneumocystis or other opportunistic infections), pneumothorax and severe anemia are all causes. Treatment includes supplemental oxygen in most cases. Morphine sulfate in low doses and/or anxiolytic agents to alleviate air hunger is very effective. Antibiotic therapy may be warranted if pneumonia is suspected or diagnosed.
Terminal delirium, depression, and anxiety are neurologic symptoms that HIV providers have
to be able to address with their AIDS patients. Phenothiazines such as haloperidol are used in moderate to high doses, which may be required to treat delirium in the terminal AIDS patient. Inpatient care may be required for treatment and safety reasons.
Appropriate therapy also includes patience, reassurance, and frequent visits by health care personnel. Along with what has previously been stated, treatment of depression and anxiety follows the traditional therapies and may require psychiatry referral.
Dermatologic conditions are seen in every stage of HIV infection but become increasingly more problematic as the CD4 count decreases. Dry, itchy skin is seen in most patients with end-stage HIV infection and is a major complaint. Treatment of skin rash-often times seborrhea dermatitis-relieves itching. Skin infections may require systemic antibiotics and are typically easily treated.
While the incidence of opportunistic infections (OIs) has decreased in the United States due to the use of HAART, there are still a significant number of OIs in the patient population. Consequently patients with terminal disease may also need treatment of these infections for symptom management. There are several common conditions treated at the Luck Care Center worthy of discussing in terms of their etiology, clinical manifestations, diagnosis, and treatment.
Pneumocystis jiroveci pneumonia (PCP) occurred in 70% to 80% of patients with AIDS before the widespread use of HAART.10 The most common clinical manifestations of PCP are fever, progressive shortness of breath, nonproductive cough, and chest discomfort. Low oxygen level in the blood is the most characteristic laboratory abnormality. Diagnosis usually requires bronchoscopy with bronchoalveolar lavage.
Treatment with trimethoprim-sulfamethoxazole is preferred and can be given orally in mild to moderate cases. Dapsone, primaquine plus clindamycin, intravenous pentamidine, and atovaquone suspension are alternative therapies in patients allergic to sulfa drugs. 11
Other infections include a brain infection known as Toxoplasmosis which can cause fevers, headaches, and seizures. Treatment with oral medication is also available. Another brain infection known as Cryptococcus can also lead to fevers, headaches, seizures, and weakness. Treatment is with antifungal medication and can also be taken by mouth. Both of these infections require hospitalization and a spinal tap.
Hospice and HIV
During the early days of the HIV epidemic hospice care was often times needed. OIs were common and the cause of death for many HIV-infected patients. Antiretroviral therapy and prophylactic medication are responsible for the declining death rate from OIs, while death from cardiac causes, liver failure and non-HIV-related malignancies are increasing in percentage.
Traditional criteria for prognosis of less than six months include CD4 count of less than 25, weight loss of greater than 10% of normal body weight or body mass index (BMI) less than 21, serum albumin less than 2.5, CNS lymphoma, toxoplasmosis, cryptosporidiosis, progressive multifocal leukoencephalopathy, renal failure, and CHF.
Patients with advanced HIV who refuse antiretroviral therapy or who are unable to tolerate it due to side effects, highly resistant virus, and advanced liver disease also may have prognosis of fewer than six months and can be referred to hospice.
Selwyn et al have reported in a study conducted in 2000 to 2001 that the only variables that did predict risk of dying were markers of impaired functional status, such as Karnofsky score, MMSE, and deficits in daily living. 12
Hospice consists of an interdisciplinary care team which includes a physician, nurse, social worker, and chaplain. Also included are a nutritionist, home health aide, and other health care personnel. Care of the patient revolves around the needs of the patient and family. Personal care provided by the home health aide has been sited as one of the most significant aspects of hospice care for the terminal AIDS patient in surveys of families. There are four levels of care: home care, inpatient care, continuous care, and respite care. Medication and other treatment related to the terminal diagnosis are covered by hospice.
Hospice care for HIV patients works best when the HIV provider remains active in the care of the patient through death. Patients and families become accustomed to the specialized care and expertise of the HIV provider. Experience shows continued antiretroviral therapy, MAC prophylaxis, PCP prophylaxis, CMV prophylaxis, cryptococcal prophylaxis, and frequent office or home visits are oftentimes essential for psychological, social, spiritual, and physical comfort, which is the essence of hospice care.
While conventional wisdom would have the provider to stop all antiretroviral medications, recent reports tend to show that despite multi-resistant virus being present in heavily treated patients, most patients would still benefit from continued antiretroviral therapy.
However it is likely that patients with end-stage AIDS are no longer on antiretroviral therapy or have never been adherent to their ARV regimen. Also continuation of PCP prophylaxis, MAC and toxoplasmosis prophylaxis allows for avoidance of opportunistic infections.
Hospice care also provides bereavement services for friends, family, and loved ones. It is equally as important to provide bereavement services to staff members who are usually very involved in the patient’s care. To this end there are annual memorial services remembering patients who have died during the previous year. Former patients’ families are invited as well as current patients.
There are typically family members from years past who participate in the service and express their appreciation for the clinics services. Hospice care provides needed support for patients, which is particularly important for some of the HIV infected who have not disclosed their condition to their family and friends or who have been otherwise isolated because of their disease.
Case Study: Part IV
After continuous pleading with the patient to disclose her HIV status Mrs. S was finally convinced that it was paramount that she make known her HIV status to the hematologist. While she was in the hospital for another blood transfusion she gave permission to verbally confirm her HIV status to her hematologist over the telephone. She was crying over the phone; it was a huge relief and turning point for Mrs. S to release this heavy burden.
After several diagnostic tests it was found that she had leukemia (a blood cancer).
Mrs. S had to undergo chemotherapy to try and stop the growth of cancer and she developed horrific and painful side effects.
The first couple of cycles of chemotherapy were not effective, so her children begged her to try it one more time; unfortunately this did not stop the cancer. During her treatment for the leukemia, Mrs. S’s husband left their home.
It was then suggested by the physician treating her leukemia that she consider hospice as an option for care. The physician informed Mrs. S and her family that the care she received from hospice would mange her pain, and assist them with her daily care. Since traditional therapy had not improved her condition and that all options for treatment had been exhausted she agreed to be admitted to hospice. As it turned out Dr. Johnson, the internal medicine physician for the Luck Center is also a medical director for a hospice company in Illinois. The hospice team managed Mrs. S’s severe pain, they also addressed her psychosocial, and spiritual needs. This brought her solace during her final days and she died in her home with dignity and in comfort with her family and friends at her side.
The Luck Care Center honors the memory of Dr. Sherry Luck, the founder of the center and patients each year with a memorial service in the community she faithfully serviced. In May 2006 the center honored Mrs. S along with the numerous other patients that the Center serviced throughout the year. These services give the family member(s), friends and the staff a setting in which they can fellowship and come together, emotionally, spiritually and sometimes physically to reflect and honor the memory of their loved ones and former patients.
At the Luck Care Center, providing counseling for spiritual distress is a very important component of the comprehensive care for the Center’s HIV positive patients and their families. In the next segment of this chapter Ms. Pernessa Steele will discuss the important role of the church in the providing spiritual care for persons of African descent with HIV/AIDS.
A Faith Perspective and Initiative
Pernessa C. Seele
Founder/CEO, Balm In Gilead
Terrie E. Griffi, DMin
THE BALM IN GILEAD
“Years ago, when I was working at Harlem Hospital, I was stunned by the sight of people and families suffering from AIDS amid a seemingly heartless community that neither understood the reasons for their pain, nor sought to alleviate their suffering. It was revealed to me that what was missing was the faith imperative-the directive from religious leaders to their congregations to learn, act, and care as their Lord would expect of them in the age of HIV/AIDS”.
Pernessa C. Seele
The Balm in Gilead was established to develop educational and training programs specifically to meet the needs of faith communities that attempt to become compassionate centers for HIV/AIDS ministries and education. Today, thousands of Black churches throughout the community are delivering AIDS education and direct services to those infected with HIV, and spiritual care to all affected by this epidemic. The Balm In Gilead spearheads a dynamic response to the AIDS crisis in the Black community.
How has the Balm In Gilead accomplished such a monumental feat in such a short time? It was clear the center had to develop educational and training programs specific to the needs of faith communities. Under the umbrella of the Balm In Gilead and with the tireless commitment from the staff and the community at large, the center developed various programs to address this pandemic crippling our communities.
Balm In Gilead Programs
- The Black Church Week of Prayer. The Black Church Week of Prayer for the Healing of AIDS is a week-long education and awareness campaign highlighting the role of the black church in addressing the AIDS crisis. This campaign serves to pave the way for the continuous delivery of prevention education and services to the African American community via faith communities.
- Our Church Lights The Way-HIV Testing Campaign. The Black Church HIV Testing Campaign engages the support of black ministers to empower and support individuals to be tested for HIV.
- Faith Based HIV/AIDS National Technical Assistance Center. The Balm In Gilead operates the nation’s only HIV/AIDS technical assistance center designed specifically to serve churches as well as public agencies and community-based organizations that wish to work with black churches on AIDS issues. The purposes of the National Faith-Based HIV/AIDS Training & Technical Assistance Center are:
- To enhance the ability of black churches to respond to HIV/AIDS by providing capacity building and technical assistance services;
- To increase the cultural competence of public health professionals as well as medical and other direct service providers to work appropriately and effectively with the black faith community.
Black Church HIV/AIDS Training Institute
The Black Church HIV/AIDS Training Institute is designed to convene pastors, deacons, missionaries, church school educators, youth ministry leaders, church nurses, and other auxiliary leaders of the black church to examine, discuss, and seek solutions that effectively address the continuing impact of HIV/AIDS on black people. At the Black Church HIV/AIDS Training Institute, we invite all church ministries to re-dedicate themselves to the critical role of leader as we seek God’s guidance in living through this sad hour of history, when more than 25 million people with HIV/AIDS in the world today are African or of African descent.
Palliative Care and the Role of the Church for Persons of African Descent
Untimely death is a seemingly common element of today’s society. It is no longer just the last rite of passage of the elderly but a constant presence of violence and incurable diseases that strike the young and old-a multitude of life threatening illnesses, suicides, and homicides. Perhaps not since the days of slavery and lynching in the public square have the lives of African Americans seemed to be so dispensable. Emotional suffering, loss, and bereavement are common elements of life in our communities today. Compounded by the stigma associated with HIV/AIDS, parents, and children are choosing to die silently from loss and grief as they sit quietly inside and outside our church doors.
The role of the African American church in palliative care, though historically it may not have been seen as such, is based on a holistic model of care. Holistic care embraces the total person-physically, spiritually, and emotionally. However, one cannot make inquiries into the role of the African American church in palliative care without taking into consideration the role of the leader of the church, the pastor.
Since the term pastor is derived from the word shepherd, this metaphor is important in understanding the nature of pastoral ministry. The image of God as shepherd in Psalm 23 is a reflection of the character of God and the certainty of God with us. In some religious traditions and denominational distinctions, ministerial leadership roles may be referred to as bishop, elder, priest, or overseer. He or she is the one who has been called and commissioned by God to serve the people of God and to “ equip the saints for the work of ministry, for the building up the body of Christ” ( Ephesians 4:12 RSV). Pastors have been given the ministerial office to occupy in a representational role on behalf of the church. The pastor fills a powerful symbolic role as he or she ministers to and with the congregation of God’s people.
Recognizing that both pastor and people are in ministry together, there are four critical components that I believe guide the role of the African American church in palliative care:
- Pastoral preparation and leadership
- Pastoral counseling and care
- Ministerial support and advocacy
- Pastoral Preparation and Leadership. I will give you shepherds after my own heart, who will feed you with knowledge and understanding. Jeremiah 3:15 NSRV.
The pastor and a cadre of those called to the ministry of care, work in tandem to provide compassionate care to persons as they go through the various stages of life, which inevitably includes pain and suffering, loss, and bereavement.
The pastor is the theologian-in-residence of the church and must embrace palliative care with skill and knowledge to affirm life with all of its many challenges. The essential preparation of the pastor enables him or her to think and see clearly all of the components of an individual’s life without judgment and/or criticism. The pastor must have the capacity to offer insights and give direction through the prism of an inclusive loving God to those who serve with him or her in ministry and to those individuals seeking care and support. The care of souls is sacred; as such, it is a shared responsibility among pastors, lay leadership, and those called to the ministry of care.
- Pastoral Care and Counseling. Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light. Matthew 11:28-30 RSV. The significance of pastoral care and counseling has been recognized by the church from its inception. Bearing another’s burdens, and as such fulfilling the law of Christ (Galatians 6:2), is a responsibility entrusted to every member of the community of faith but is specifically charged to the pastor as the “shepherd of the flock.“
The African American pastor’s role as caregiver and counselor, alongside those in the church who are called and certified with appropriate intervention skills, has been a part of the African American church tradition before clinical and pastoral counseling as a specialty became normative. Historically, in the black church experience, the pastor was the one who was trusted; he or she was considered insightful, compassionate, and concerned about issues of social justice affecting his or her parishioners. The same view is held today.
The pastor, as caregiver and counselor, strengthens the weak, heals the sick, binds up the injured, and brings back those who stray (Ezekiel 34). The pastor attends to the overall well-being of his or her parishioners, whatever their physical, spiritual, or emotional state may be, and encourages them on their journey with God. This is the foundation of pastoral care.
In the black church tradition, the pastor is one who walks with the Master, and whose own life is held together by grace and mercy. It is in this context, that pastoral care and counseling is extended to those who suffer and to those who provide care for the suffering.
The pastor, through his or her life experience and training, is therefore able to affirm life during sickness, pain, loss, bereavement, and in moments of transition during the process of dying. He or she addresses the end of life with the assurance that God has provided for us a better place after death. Throughout the grief process and bereavement, support networks are in place, ministers and home missionaries (those who care for the needs of people within the church and community-at-large) stand ready to walk through the drama and chaos long-term illness can present. Additionally, they are equipped to assist in identifying community resources should the need arise.
- Ministerial Support and Advocacy. [E]ncourage the fainthearted, help the weak, be patient with them all. I Thessalonians 5:14 RSV. Ministry is always comprised of both the laity (the people) and those called and ordained to a designated leadership role, who are symbolically representative of the whole. In most African American churches, there are ministers and laity who support the work of the pastor by walking with and standing by those who are wrestling with feelings of hopelessness and despair in the midst of their pain and life-altering crises. Specifically, there are those persons in the African American church whose role is to serve as advocates for the voiceless and act as a liaison between institutions of care to assist families who are unable to navigate through the bureaucratic chaos often associated with long-term care needs and terminal illness.
Ministers of care are often assigned to hospitals, prisons, nursing homes, and hospice care facilities to keep watch over individuals and to visit with family members and friends. Support to the sick and dying, family and friends, and to those providing care includes the provision of prayer, meditation materials, and daily calls of concern. Advocacy, in the black church, is the promise of God’s presence. Pastor and laity alike represents the Divine Incarnate walking alongside those who are sick, suffering, and standing in need of holy intentions. Ministers of care enable individuals to face their situations with dignity and even in the midst of stigma and shame affirming always that “nothing shall separate us from the love of God“ (Romans 8:39).
- Prayer. Give ear to my words, O Lord, give heed to my groaning. Hearken to the sound of my cry, my King and my God, for to thee I pray. Psalms 5:1-2 (RSV). Prayer, therefore, is lifted up to the “hearer of the prayer” and has power to act on behalf of the petitioner. It has been documented time and time again for non-believers that prayer can provide relief from pain and suffering. A significant role of the African American church in palliative care continues to be the mobilization of prayer partners and intercessory prayer groups to intercede on behalf of those who are living with pain, anguish, and, sometimes, daily uncertainty.
Gathering families together for prayer is another way to show support for families coping with a loved one’s illness and their own bereavement. Prayer works. Prayer involves devotion, trust, respect, and a sense of dependence on the One to whom prayer is directed. The African American church tradition is steeped in the power of prayer and God’s word as recorded in the various transliterations of the Bible. The entire scriptural record affirms that God is the One to whom prayer should be directed. Prayer is the power that brings the breakthrough in sickness and in death. “ Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.” Mark 11:24 (RSV).
And so the role of the African American church in palliative care takes on many dimensions, among which are pastoral preparation and leadership, the pastor having skills and knowledge to affirm life and all of its many challenges from birth to death; pastoral care and counseling , strengthening the weak, offering care to the sick and giving hope to the dying; ministerial support and advocacy, walking with and standing by persons who are voiceless and whose faith may be wavering; and prayer, the power to change and sustain.
These are the crucial elements that guide the role of the African American church in palliative care through “the valley of the shadow of death.” Through many dangers toils and snares, the African American church must continue to beam a light on the path of one’s journey through life, from the cradle to the grave. We are eternally reminded that we must not fear, because the One to whom we pray is always with us.
Consistent follow up, appropriate symptom management, pain assessment, and provider commitment are needed for complete care of patients with HIV. Palliative care in general and HIV care share a similar philosophy. Both types of care embrace a holistic approach, providing nursing care, psychosocial care, medical care, symptom management, case management, and dietary and medication management.
Culturally competent, holistic, comprehensive, spiritual, and compassionate care for HIV-positive clients must be prioritized. As we move forward in this fight against AIDS, we must be mindful that it is the silence, denial, and stigma of AIDS that continues to cripple a community’s response to AIDS education, HIV testing, and treatment. The involvement of the medical community and churches in this battle against AIDS is imperative if we are to conquer this epidemic here and throughout the global community. It is vital that leaders of the community organize to educate and empower the residents with the essential information and tools to enable them to advocate for good quality, equitable care. The Black church must respond to the needs of the community by providing unbiased spiritual care when it is most needed for its parishioners.
It is not enough to express our sympathy by words; we should be ready to crystallize it into actions.
— Frances E. W. Harper
African American writer and poet
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- Scripture quotations marked RSV are taken from the New Oxford Annotated Bible with Apocrypha Expanded Edition © 1965, 1977. Oxford University Press, Inc.