A Guide To Primary Care For People With HIV/AIDS, 2004 edition

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.
In traditional medical care, efforts are primarily curative or restorative until a poorly defined point when provider and patient acknowledge disease progression and decide to shift toward less aggressive management (See Figure 15-1a). In chronic progressive illnesses supportive care might be provided simultaneously assuring maximum quality of life throughout the course of illness for patients, family and caregivers (Figure 15-1b).

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:

• Goals of care are patient- and family-driven and frequently revised.
• Relationships with an interdisciplinary team provide the mechanism for care.
• Truth-telling and support for realistic decisionmaking are the norm.
• Aggressive prevention and control of bothersome symptoms are paramount.
• It is understood that psychosocial, emotional, and spiritual needs significantly impact symptoms.
• Integration of a palliative care approach throughout the disease trajectory improves quality of life.
• Early identification of and communication with a proxy decisionmaker is a priority.
• Evaluation and treatment decisions are modified based upon prognosis.
• Near the end of life, unnecessary drugs are eliminated and comfort measures provided.
• Assisting the dying person to achieve psychosocial and spiritual closure is a goal of care.
• Family and friends are provided with care techniques and communication skills.
• Care of the caregiver and of the provider are essential aspects of providing supportive care.
• Legal, ethical, and cultural aspects are acknowledged and respected.
• It is recognized that dying is an inevitable part of life, not an enemy to be denied.
• Anticipatory grieving and bereavement support for the family are included in 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:

• Open appraisal of stage of disease with appropriate goal setting
• Yearly review of goals (more frequently if symptomatic)
• Anticipation of and prophylaxis for side effects of ART
• Education regarding advance care planning well before patient is symptomatic
• Use of standardized questionnaires to assess presence of symptoms and their impact on quality of life
• Provision of separate medical appointments to manage symptoms such as pain or weight loss
• Reduction of diagnostic studies and number of medications as prognosis shortens
• Regular review of health power of attorney and support of patient wishes
• Discussions of prognosis with patient and family soon enough to allow closure near the end of life
• Referral to hospice/palliative home care when office visits become burdensome for patient
• Maintenance of contact with family during bereavement period
• Acknowledgement of staff members' feelings of loss when patients die

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.

Table 15-1. Mnemonic for Assessment of Pain

	Ask about pain regularly; Assess systematically
	Believe the patient and family
	Choose treatment options appropriate to patient and setting
	Deliver medications on an "around-the-clock" basis with adequate "breakthrough" doses
	Evaluate results frequently; Empower patients and families to control pain

The following guidelines are helpful in prescribing pain medication (American Pain Society, 1999):

1. Use a grading system (such as the scale of 0-10) to document pain severity and compare the number obtained to a second number following treatment to evaluate response.
2. Start with a dose that will acutely relieve the pain. This may be given intravenously or subcutaneously to achieve a rapid response. Care should be taken to observe for any signs of respiratory depression in opiate-naive patients who receive parenteral opioids.
3. Next, begin a low dose every 3-4 hours (based on the half-life of the drug) "around-the-clock," not on an as-needed, basis. The initial dose should be chosen based on the age, size, and renal/hepatic function of the patient. (See Suggested Resources for additional guidance on pain management.)
4. A " breakthrough dose" should also be prescribed every 1-2 hours prn equal to a sixth of the total daily opioid dose. This allows for development of a steady state drug level and avoids alternation of great pain intensity with somnolence. This is the same approach used to control hyperglycemia with a sliding scale of regular insulin based on glucometer readings; doses are based on pain scores.
5. When pain is fairly well controlled, it is appropriate to change the patient to a long-acting pain medication for ease of administration. The dose is calculated by adding together the total dose taken in 24 hours and dividing by the half-life of the new preparation. For example, for a medication meant to be given every 12 hours: divide the total dose by 2, and this number will be the dose every 12 hours. Don't forget the breakthrough dose. This is a short-acting opioid, preferably of the same type as the long-acting one for use at times when the pain is not adequately controlled.
6. Other forms of administration include liquid formulations for persons with difficulty swallowing, rectal suppositories, "sprinkles" that can be mixed with soft food, and patches that allow absorption of the medication through the skin.

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).

Source: Alexander C, Back A, Perrone M. "Medical Care at the End of Life." In O'Neill JF, Selwyn PA, Schietinger H, eds. A Clinical Guide to Supportive and Palliative Care for HIV/AIDS. Rockville MD: Health Resources and Services Administration. 2003.

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.

Table 15-3. Mnemonic for Breaking Bad News

	Setting and listening Skills
	Patient and family Perception of condition
	Invitation to patient to determine how much Information he/she wants to know
	Knowledge; reviewing the facts
	Explore Emotions and Empathize
	Summary & Strategy

Source: Adapted from Baile W, Buckman R. Practical Guide to Communication Skills in Clinical Practice. Niagara Falls, NY: Medical Audio Visual Communications, Inc, 1998.

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:

• Appoint a health power of attorney and talk with that person about support preferences
• Make a will to avoid conflict following death, including guardianship issues
• Attempt to resolve previous misunderstandings or estrangements
• Encourage family and friends to openly discuss the patient's deterioration to avoid a "conspiracy of silence"
• Express love and appreciation to family, friends, and staff
• Engage family, friends, and staff in a life review (eg, telling stories about accomplishments, regrets, funny things that have happened along the way)
• Create a memory book or video tape, or write letters for children left behind
• Discuss plans or preferences regarding funeral or memorial service
• Say goodbye to family, friends, and caregivers (the patient needs reassurance that those left behind will be cared for and that he or she will be remembered)

Table 15-4. Components of a Discussion about End-of-life Care

I. Making preparations prior to a discussion about end-of-life care: Review previous knowledge of the patient and/or their significant others Review previous knowledge of the patient's attitudes and reactions Review your knowledge of the disease prognosis, treatment options Examine your own personal feelings, attitudes, biases, and grieving Plan the specifics of location and setting: a quiet, private place Have advance discussion with the patient or family about who will be present

II. Holding a discussion about end-of-life care: Introduce everyone present If appropriate, set the tone in a non-threatening way: "This is a conversation I have with all my patients…" Find out what the patient or significant other understands Find out how much the patient or significant other wants to know Be aware that some patients do not want to discuss end-of-life care Discuss prognosis frankly in a way that is meaningful to the patient Do not discourage all hope Avoid temptation to give too much medical detail Make it clear that withholding life-sustaining treatment is NOT withholding caring Use repetition to show that you understand what the patient or the significant other is saying Acknowledge strong emotions and use reflection to encourage patients or their significant others to talk about these emotions Tolerate silence

III. Finishing a discussion of end-of-life care: Achieve common understanding of the disease and treatment issues Make a recommendation about treatment Ask if there are any questions Ensure basic followup plan and make sure the patient and/or significant others know how to reach you for questions

Source: 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.

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
be discontinued (see Table 15-5).

Table 15-5: Life's End

The following mnemonic may be helpful when writing DNR orders: LIFE'S END. This stands for:
	Keep the Lips and mouth moistened with ice chips
	Expect urinary and fecal Incontinence when patient is too weak to get out of bed; insert a catheter/use bed pad
	Expect Fevers and use around-the-clock antipyretics possibly by the rectal route
	Eliminate all but Essential medications
	Be aggressive about Symptom management
	Eating decreases; substitute other supportive activity for family members who want to continue feeding
	Nursing call orders should be revised
	Decubitus ulcer prevention requires turning every 2 hours

Source: Copyright Palliative Care Program, University of Maryland, Baltimore, MD; 1999. Reprinted with permission.

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:

• Reassure the family that they provided good and loving care
• Allow family members to remain at the bedside as long as necessary to bring closure
• In the hospital, place something on the bed to honor the space recently vacated
• Tell family when to expect autopsy findings if autopsy is requested
• If an autopsy is performed, schedule time to discuss this with the family
• Notify other staff members who may have cared for this patient
• Send a condolence card
• Call family 1-2 weeks after the death to listen

Table 15-6: What the Family Should Expect of the Patient Prior to Death

1-2 weeks prior to death	Withdrawal from people Decreased food and liquid intake Talking with those who are already dead Sleeping longer periods Picking at clothing Feeling very fatigued
Days to hours prior to death	Surge of energy; seems like "himself" Cheyne-Stokes respirations Decreased urine output Acral and large joint cyanosis "Death rattle" Weak pulse and decreased blood pressure

Source: Adapted from Kearnes, Gone from My Sight. Depoe Bay OR: BK Books; 1995.

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.

Table 15-7: Common Signs of Stress for Caregivers

Physical	Psychological	Behavioral
Backaches	Anger and frustration	Emotional outbursts
Change in eating patterns	Loss of self-confidence and self-esteem	Withdrawal from friends and family
Diarrhea	Loss of interest in and commitment to work	Loss of punctuality and neglect of duty
Elevated blood pressure	Feelings of inadequacy, helplessness, and guilt	Decrease in judgmental ability
Fatigue	Feelings of restlessness	Inability to focus on tasks
Gastrointestinal problems	Depression	Tearfulness
Headaches	Sense of being overwhelmed or overloaded	Increased use of alcohol or other drugs
Insomnia	Mood swings	Difficulty getting along with people
Muscle tension	Sense of failure	Impaired work performance
Weight loss	Anxiety about the future	Resistance to change

Source: 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.

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Key Points

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• Palliative medicine is the discipline devoted to the relief of suffering and the promotion of quality of life. Palliative care has often been thought 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 HIV disease.
• Advance care planning is an attempt to identify a decisionmaker should the patient become unable to communicate his or her own wishes.
• 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.
• There are multiple physical, psychosocial, and spiritual issues that need resolution in order for the patient to die peacefully and to leave satisfactory memories for family and friends.
• The focus of providers tends to be on caring for others. Providers who suffer from the death of more than one patient over a short time period can experience symptoms of post-traumatic stress disorder. They need to take the time to effectively grieve.

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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.

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