Advance Care Planning in Chronic Illness #162
2
FAST FACTS AND CONCEPTS 243 lationships can lead to feelings of guilt, such feel- ings should be explored and addressed. To facili- tate identification with emotions, it may prove use- ful to talk about your own emotions surrounding death and to offer opportunities for the child to discuss death. The child should also be allowed to participate, as much as they feel comfortable, in seeing the dying patient and participating in ac- tivities surrounding the death. • 12–18 years (Adolescent)—Adolescents also have an adult understanding of death. They are develop- ing the ability to think abstractly and are often cu- rious of the existential implications of death. They often reject adult rituals and support and feel that no one understands them. They may engage in high- risk activities in order to more fully challenge their own mortality. They often have strong emotional re- actions and may have difficulty identifying and ex- pressing feelings. It is important that adults support independence and access to peers, but to also pro- vide emotional support when needed. The generalizations and strategies provided above only serve as a framework when dealing with the death of a loved one. When in doubt, seek help from pedi- atricians, mental health professionals, and others spe- cializing in bereavement. REFERENCES Gudas LS, Koocher GP: Grief and bereavement. In: Behrman RE, Kliegman RM, Jenson HB (eds): Nelson Textbook of Pe- diatrics, 17 th ed. Philadelphia: Saunders, 2004, pp. 117–120. Himelstein BP, Hilden JM, Boldt AM, Weissman D: Pediatric palliative care. N Engl J Med 2004;350:1752–1762. Trozzi M, Dixon S: Stressful events: Separation, loss, violence, and death. In: Dixon SD, Stein MT (eds): Encounters with Children: Pediatric Behavior & Development, 3 rd ed. Phila- delphia: Mosby, 2000, pp. 547–567. Fine P (ed): Processes to Optimize Care During the Last Phase of Life. Scottsdale, AZ: Vista Care Hospice, Inc., 1998. Address reprint requests: Adam Himebauch, M.D. Pediatric Residency Program 9557 Main Building The Children’s Hospital of Philadelphia 34 th Street and Civic Center Boulevard Philadelphia, PA 19104 E-mail: [email protected] Advance Care Planning in Chronic Illness #162 SARA N. DAVISON, M.D. A CORNERSTONE of excellent medical care is helping patients decide how future medical interventions match their personal goals and values for care near the end-of-life. This Fast Fact reviews key concepts of the advance care planning process. Advance care planning (ACP) is a process of commu- nication between the patient, the family/health care proxy, and staff for the purpose of prospectively identifying a sur- rogate, clarifying treatment preferences, and developing in- dividualized goals of care near the end of life. Advance di- rectives (e.g. living wills, durable powers of attorney for health care) are legal documents with capabilities and re- quirements that vary between jurisdictions. PRIMARY GOALS OF ACP • Enhance patient and family education about their ill- ness, including prognosis and likely outcomes of al- ternative care plans. • Define the key priorities in end-of-life care and de- velop a care plan that addresses these issues. • Shape future clinical care to fit the patient’s prefer- ences and values. OTHER POTENTIAL BENEFITS OF THE ACP PROCESS • Help patients find hope and meaning in life, and help them achieve a sense of spiritual peace. • Strengthen relationships with loved ones. Note: At a minimum, ACP should be considered whenever the health care provider would not be surprised if that patient died within the next 12 months. FACILITATING ACP • Take the lead in starting the discussion. Many pa- tients are reluctant to initiate an ACP discussion; DOI: 10.1089/jpm.2008.9972
Transcript of Advance Care Planning in Chronic Illness #162
FAST FACTS AND CONCEPTS 243
lationships can lead to feelings of guilt, such feel-ings should be explored and addressed. To facili-tate identification with emotions, it may prove use-ful to talk about your own emotions surroundingdeath and to offer opportunities for the child todiscuss death. The child should also be allowed toparticipate, as much as they feel comfortable, inseeing the dying patient and participating in ac-tivities surrounding the death.
• 12–18 years (Adolescent)—Adolescents also havean adult understanding of death. They are develop-ing the ability to think abstractly and are often cu-rious of the existential implications of death. Theyoften reject adult rituals and support and feel that noone understands them. They may engage in high-risk activities in order to more fully challenge theirown mortality. They often have strong emotional re-actions and may have difficulty identifying and ex-pressing feelings. It is important that adults supportindependence and access to peers, but to also pro-vide emotional support when needed.
The generalizations and strategies provided aboveonly serve as a framework when dealing with the deathof a loved one. When in doubt, seek help from pedi-
atricians, mental health professionals, and others spe-cializing in bereavement.
REFERENCES
Gudas LS, Koocher GP: Grief and bereavement. In: BehrmanRE, Kliegman RM, Jenson HB (eds): Nelson Textbook of Pe-diatrics, 17th ed. Philadelphia: Saunders, 2004, pp. 117–120.
Himelstein BP, Hilden JM, Boldt AM, Weissman D: Pediatricpalliative care. N Engl J Med 2004;350:1752–1762.
Trozzi M, Dixon S: Stressful events: Separation, loss, violence,and death. In: Dixon SD, Stein MT (eds): Encounters withChildren: Pediatric Behavior & Development, 3rd ed. Phila-delphia: Mosby, 2000, pp. 547–567.
Fine P (ed): Processes to Optimize Care During the Last Phaseof Life. Scottsdale, AZ: Vista Care Hospice, Inc., 1998.
Address reprint requests:Adam Himebauch, M.D.
Pediatric Residency Program9557 Main Building
The Children’s Hospital of Philadelphia34th Street and Civic Center Boulevard
Philadelphia, PA 19104
E-mail: [email protected]
Advance Care Planning in Chronic Illness #162SARA N. DAVISON, M.D.
ACORNERSTONE of excellent medical care is helpingpatients decide how future medical interventions
match their personal goals and values for care near theend-of-life. This Fast Fact reviews key concepts of theadvance care planning process.
Advance care planning (ACP) is a process of commu-nication between the patient, the family/health care proxy,and staff for the purpose of prospectively identifying a sur-rogate, clarifying treatment preferences, and developing in-dividualized goals of care near the end of life. Advance di-rectives (e.g. living wills, durable powers of attorney forhealth care) are legal documents with capabilities and re-quirements that vary between jurisdictions.
PRIMARY GOALS OF ACP
• Enhance patient and family education about their ill-ness, including prognosis and likely outcomes of al-ternative care plans.
• Define the key priorities in end-of-life care and de-velop a care plan that addresses these issues.
• Shape future clinical care to fit the patient’s prefer-ences and values.
OTHER POTENTIAL BENEFITS OF THE ACP PROCESS
• Help patients find hope and meaning in life, and helpthem achieve a sense of spiritual peace.
• Strengthen relationships with loved ones.
Note: At a minimum, ACP should be consideredwhenever the health care provider would not be surprised if that patient died within the next 12 months.
FACILITATING ACP
• Take the lead in starting the discussion. Many pa-tients are reluctant to initiate an ACP discussion;
DOI: 10.1089/jpm.2008.9972
physicians and nurses can “open the door” to suchdiscussions by asking, How do you feel things aregoing or, have you given any thought to how youwish to be cared for should your illness get worse?
• Explain the rationale for ACP. Patients identifyACP as an important part of medical care if theyhave a clear idea of how the process will benefitthem: I’d like to spend some time talking to youabout the future course of your illness so that I havea clear understanding of your wishes.
• Use good communication skills: Do not use med-ical jargon (e.g., ventilator) and language should bepositive (“I want to ensure you receive the kind oftreatment you want”). Use empathetic listening skills(using words, posture and appropriate touch to con-vey sense of caring) to help build a trusting rela-tionship. Ensure privacy and allow sufficient timefor the discussion.
• Provide information: Patients require realistic in-formation on prognosis and treatment options withan emphasis on how you expect their illness will im-pact their daily function.
• Identify a surrogate: Patients should be encouragedto both identify a surrogate decision-maker and mostimportantly, to discuss their wishes with this indi-vidual. The power of the ACP discussion is the shar-ing of information between patient and the patient’ssurrogate decision maker and other family members,and the health care team. The surrogate should havethe greatest knowledge of the patient’s preferencesand values. If desired, offer to facilitate a discussionbetween the patient and their surrogate or other fam-ily members.
• Identify how future decision-making will occur.A patient may have specific desires for how infor-mation is shared among family members—thisneeds to be explicitly discussed.
• Determine goals of care: If decisions need to bemade at the same time as an ACP discussion, this isan appropriate venue to establish the goals of care(see Fast Facts #16 and 65).
CAUTIONS
• The ACP process must be sensitive to disease, gen-der, age, social, and cultural contexts.
• Providing opportunities to discuss end-of-life issuesdoes not mean everyone will want or be able to doso at that moment. ACP is an evolving process thatrequires varying amounts of time to be effective. Pa-tients often need time to reflect on information andhow it impacts their lives.
REFERENCES
Martin DK, Thiel EC, Singer PA: A new model of advance careplanning. observations from people with HIV. Arch InternMed 1999;159:86–92.
Briggs L: Shifting the focus of advance care planning: using anin-depth interview to build and strengthen relationships. In-novations in End-of-Life Care, March-April 2003, Volume5, Number 2. �www.edc.org/lastacts�
Johnstone SC, Pfeifer MP, McNutt R: The discussion about ad-vance directives. Arch Intern Med 1995;155:1025–1030.
Address reprint request to:Sara N. Davison, M.D.
Division of Nephrology & ImmunologyDepartment of Medicine
University of AlbertaEdmonton AB T6G 2G3
E-mail: [email protected]
FAST FACTS AND CONCEPTS244
