A Guide To Primary Care For People With HIV/AIDS, 2004 edition< Previous | Home | Next >
Chapter
15
Incorporating Palliative Care into HIV Care TOP What is palliative care? Palliative
medicine is the discipline devoted to the relief of suffering and
the promotion of quality of life. Palliative, meaning non curative,
has often been misunderstood to be limited to end-of-life or hospice
care; it is rather a more general term for the type of supportive
care needed throughout the trajectory of any chronic illness or
major injury. Figure 15-1a: Traditional Model of Care (first curative, then palliative) Why is palliative care still needed for people with HIV/AIDS, now that antiretroviral therapy (ART) is so successful? AIDS, originally considered a terminal illness, has transitioned to a chronic disease for those who are able to use ART. However, there is still a steady death rate in the United States of 15,000 to 16,000 per year. While the numbers are low compared with the epidemic in the early years, persons living with HIV disease continue to experience pain, body habitus changes, and other physical and emotional symptoms that negatively impact their daily quality of life. Preventing and controlling these problems are as relevant as reducing viral load. Setting realistic goals and improving self-esteem allow the person with HIV disease to remain in control of his/her life and to be a productive member of society. Figure 15-1b: Integrated Model of Care (curative and palliative together) What does palliative care focus on? The following are essential elements of palliative care:
How can palliative care be incorporated into primary HIV care? A palliative approach to HIV disease management begins by obtaining an accurate assessment of the patient's support system, life goals, and preferences early in the disease process. Then the following activities are incorporated into the care plan:
What are some common symptoms experienced by persons with advanced HIV disease? In surveys, patients receiving ART report experiencing the same symptoms as patients reported in the earlier years of the epidemic, but the frequencies of symptoms have changed (Mathews et al, 2000; Vogl et al, 1998). Fatigue, sadness, diarrhea, and fever continue to plague patients even when disease is controlled by ART. Pain is still experienced by up to 75% of patients and may be present in multiple areas at once, including the extremities and oral, esophageal, abdominal, or rectal sites. Adequate treatment for one type of pain may only expose another. This often raises the specter of "drug-seeking behavior" when in fact the patient is simply able to be aware of the secondary pain after the greater pain is relieved (see Chapter 13, Management of Substance Abuse). Peripheral neuropathy can be caused by ART, HIV disease itself, or unrelated disease such as diabetes. This pain does not seem to be related to the degree of control of viral burden, and cause must be sought through historytaking as many patients seem to overlook early manifestations such as numbness. Refer to Chapter 8, Symptom Management, as well as resources under Suggested Resources for management of pain and symptoms. How important is pain control in advanced HIV disease? Pain, as with
any symptom, should be described, quantitated, treated, and promptly
reevaluated with appropriate dose modification of therapy (see Table
15-1). In the Guidelines for Management of Cancer Pain, pain experienced
by those with HIV disease is compared with the chronic pain experienced
by persons with cancer, which often requires management with opioids
(AHCPR, 1994). Unlike blood pressure, which might be regulated over
weeks, pain should be controlled within the shortest time possible
to prevent the development of long-term symptoms such as depression
and anhedonia.
The following guidelines are helpful in prescribing pain medication (American Pain Society, 1999):
What is advance care planning? Advance care planning is an attempt to clarify patient wishes near the end of life. Identification of a "health care proxy," a person who makes decisions if the patient becomes unable to communicate his or her own wishes, should be encouraged and documented in the medical record with contact information. Even when formal directives have not been written the patient should discuss his or her thoughts and concerns about the end of life with that person. Hosting a family meeting to discuss the issues might also be useful. A "living will" may be difficult to write because it is not possible to anticipate every event that might occur when one is critically ill. It may be better for the person to clarify general thoughts about the use of ventilators or other intensive support mechanisms for sustaining life. Permanency planning should be included in this discussion whenever children are involved. Family members feel inadequate when confronted with end-of-life decisionmaking. Realistic guidance provided to the health care proxy can minimize that emotional burden (see Table 15-2). The provider should discuss in detail what a resuscitation effort means and give a specific description of what might happen during the use of "life supports" (eg, one cannot talk and may not be able to communicate when on a respirator; the combination of early dementia and an episode of hypoxia might result in significant diminution of mental capacities).
What is hospice care? Hospice can
be a philosophy, a place, a type of home care, or a reimbursement
mechanism (EPEC Curriculum, 2003). The goal of hospice care is to
reduce suffering by controlling symptoms, consolidating medications,
and supporting the patient and family in living fully until death.
However, in the United States obtaining hospice care for any individual
often depends on insurance coverage. For a person on Medicare a
referral to hospice care requires that the patient have a life expectancy
of less than 6 months if the disease runs its normal course. This
is a complex determination in any chronic illness. Patients who
have decided to forego restorative therapy or who no longer want
to be admitted to a hospital are not the norm in HIV disease, but
working with a local hospice program may make this transition less
burdensome. For financial reasons the patient may be offered "palliative"
rather than "hospice" care. Care at the End of Life TOP What are the challenges of end-of-life care for the provider? Deciding when to make the transition from curative/restorative mode to one of comfort measures only and having the skills to communicate this to the patient are probably the greatest challenges facing the provider (see Table 15-3). While guidelines exist for having difficult conversations effectively, avoiding conveying a message of abandonment is the real difficulty. Being adept at managing symptoms such as pain can give the provider confidence when initiating this conversation. Reassuring the patient and family that comfort measures are always possible and isolating one problem at a time may minimize their sense of being overwhelmed. Simply asking the patient what goals are important helps refocus on concrete issues that can be successfully mastered. Another significant challenge for the provider may be foregoing invasive diagnostic studies when the patient is moving closer to death. The astute practitioner needs to rely on physical assessment and knowledge of probabilities to surmise the cause of a symptom. Using one medication for multiple outcomes minimizes pill burden. For example, steroids may be employed for relief from dyspnea; this same drug might also improve appetite and sense of well-being, suppress fever, and relieve achiness related to prolonged bedrest.
What roles do culture and spirituality play in end-of-life care? Culture and spirituality are significant factors affecting how end-of-life care should be delivered to each individual patient and family. Lack of clarification of cross-cultural differences can be a barrier to patients' receiving appropriate end-of-life care. Spirituality, connection with a higher power, or a sense of meaning can provide tremendous comfort and support. Not recognizing these issues or the impact of AIDS-related stigma might even add to suffering. It is useful to ask the patient if he/she has a faith and how important it is to him/her. If the provider does not feel comfortable addressing these issues, every attempt should be made to have someone on staff or for easy referral to address this need. It has been clearly documented in medical literature that spiritual concerns might be involved in exacerbation of all types of illness. How do you provide reality-based hope for the person with advanced AIDS? Hope is an intrinsic value that allows the human spirit to persevere even against great difficulty. When a person is nearing the end of life, it may not be reasonable to want to live until a certain birthday that will not occur for several months. In this case, the health care staff needs to help with a redefinition of hope that is more achievable. Some families in hospice programs have celebrated religious holidays a month ahead of time, held ceremonies before they were originally scheduled, and made videotapes of the dying person to be played during an up-coming event. How do you conduct a family meeting? Prior to a family meeting, the provider must prepare a mental agenda to identify internal and external barriers to achieving a clear and therapeutic picture of the goals important to all involved (see Table 15-4). What does the patient need to accomplish before death? There are multiple physical, psychosocial, and spiritual issues that deserve attention in order for the patient to die peacefully and to leave satisfactory memories for family and friends. The patient and family need to:
What steps should you take after writing a Do Not Resuscitate (DNR) order? After writing
an order for "No CPR" the provider should reverse these
letters to offer family and friends "RPC" - Reassurance,
Presence, and Caring. Facilitate conversations that acknowledge
the role of family and friends in care. Be present for family even
if only briefly.
For hospitalized patients, write orders to intervene that assure
comfort measures will be provided even when antibiotics or pressors
might
What can the family expect as their loved one is dying? Many people have little experience with the actual process of dying. At a time when family members feel grief and a loss of control, it is comforting to have a simple description of what to expect as they sit at the bedside. The provider needs to offer this information (see Table 15-6) as well as to suggest activities the family can do to offer comfort and to alleviate their feeling of helplessness. What must the provider do after the patient dies? At the time of death, those present need verification that in fact their loved one has died. It is useful to review what has happened and to offer supportive comments to those present as they adjust to this new information. It is comforting for them to remain with the deceased and say their goodbyes. Cultural beliefs will dictate behavior, and it is helpful to have discussed these practices ahead of time. Providers can:
How can a primary care practice or clinic avoid staff burnout when several of the patients have died? Providers who suffer from the death of more than one patient over a short time period may experience symptoms of multiple loss syndrome which, if unattended, can lead to symptoms found in post-traumatic stress disorder. They need to take the time to effectively grieve. How this is accomplished is a personal matter for each individual, but the clinic or health care facility must recognize the importance of allowing each person to come to a sense of closure after a patient's death. For some, attending the wake or funeral may be helpful. For others, a clinic-based time for remembering the individual(s) can provide a structured outlet for feelings of grief. The focus of providers tends to be on caring for others. Primary care providers often have not received formal training in preventing and identifying burnout. With an ever increasing work load and shrinking time for office visits and administrative responsibilities it is easy to miss signs of stress (see Table 15-7). O'Neill and McKinney describe a 2-pronged approach to preventing and managing burnout. This involves developing more effective individual coping skills as well as creating a less stressful work environment (O'Neill and McKinney, 2003). Examples of personal coping strategies include: 1) being mindful of eating, exercise, and sleep patterns, 2) keeping a daily journal to record the events that cause stress, and 3) discussing personal experiences with someone else. A less stressful work environment includes a choice of mechanisms for 'taking a break' from the steady emotional drain of patient care.
References TOP Agency for Health Care Policy and Research. Clinical Practice Guideline Number 9: Management of Cancer Pain. AHCPR Publication #94-0592. Rockville, MD: Agency for Health Care Policy and Research; 1994. American Pain Society. Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain, 5th ed. Glenville IL: American Pain Society; 2003. Baile W, Buckman R. Practical Guide to Communication Skills in Clinical Practice. Niagara Falls, NY: Medical Audio Visual Communications, Inc; 1998. Curtis JR. Patient-Clinician Communication. In O'Neill JF, Selwyn PS, and Schietinger H, eds. A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Rockville, MD: Health Resources and Services Administration; 2003. Education for Physicians on End-of-Life Care (EPEC) Curriculum. Chicago, IL: American Medical Association; 2003. Kearnes B. Gone from My Sight. Depoe Bay, OR: BK Books; 1995. Mathews W, McCutcheon JA, Asch S, et al. National estimates of HIV-related symptom prevalence from the HIV Cost and Services Utilization Study. Med Care. 2000;38;750-762. O'Neill JF, McKinney M. Caring for the caregiver. O'Neill JF, Selwyn PA, and Schietinger H, Eds. The Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Rockville, MD: Health Resources and Services Administration; 2003. Vogl D, Rosenfeld B, Breitbart W, et al. Symptom prevalence, characteristics, and distress in AIDS outpatients. J Pain Symptom Manage. 1999;18:253-262. World Health Organization. Cancer Pain Relief and Palliative Care, Report of a WHO Expert Committee. Publication #1100804. Geneva: World Health Organization; 1990. |