A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

More documents

Recommendations

Info

A Guide to Primary Care of People with HIV/AIDS Chapter 15: Palliative and End-of-Life Care 15 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. Table 15-2. Useful Questions for Exploring Patient and/or Family Concerns Domain Physical comfort Continuity with one’s self Maintaining and enhancing relationships Making meaning of life and death Achieving a sense of control Confronting and preparing for death Question Tell me about your pain. Can you rate it on a 10-point scale? How much do you suffer from physical symptoms like shortness of breath, fatigue, or bowel problems? What makes life most worth living for you at this time? If you were to die sooner rather than later, what would be left undone? How are your family (or loved ones) handling your illness? Have you had a chance to tell your family (or loved ones) how they are important to you? What kind of legacy do you want to leave behind? What would allow you to feel that going through this illness has a purpose? Do you have spiritual beliefs that are important in how you deal with this illness? How would you like your death to go? How much are you thinking about dying now? What are you thinking about it? 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. CARE AT THE END OF LIFE 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 126 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
A Guide to Primary Care of People with HIV/AIDS Chapter 15: Palliative and End-of-Life Care 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. S P I K E S 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) 15 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau 127
Page 1 and 2:
Edited by John G. Bartlett, MD Laur
Page 3 and 4:
2004 Edition A Guide to Primary Car
Page 5 and 6:
A Guide to Primary Care of People w
Page 7 and 8:
Page 9 and 10:
Page 11 and 12:
Page 13 and 14:
Page 15 and 16:
Page 17 and 18:
Page 19 and 20:
Page 21 and 22:
Page 23 and 24:
Page 25 and 26:
Page 27 and 28:
Page 29 and 30:
Page 31 and 32:
Page 33 and 34:
Page 35 and 36:
Page 37 and 38:
Page 39 and 40:
Page 41 and 42:
Page 43 and 44:
Page 45 and 46:
Page 47 and 48:
Page 49 and 50:
Page 51 and 52:
Page 53 and 54:
Page 55 and 56:
Page 57 and 58:
Page 59 and 60:
Page 61 and 62:
Page 63 and 64:
Page 65 and 66:
Page 67 and 68:
Page 69 and 70:
Page 71 and 72:
Page 73 and 74:
Page 75 and 76:
Page 77 and 78:
Page 79 and 80:
Page 81 and 82:
Page 83 and 84:
Page 85 and 86: A Guide to Primary Care of People w
Page 135: A Guide to Primary Care of People w
Page 180: Use these quick-reference page tabs
show all

A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

Create successful ePaper yourself

Delete template?

Save as template?