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Ann Bell, NP-C Family Nurse Practitioner
Advanced Care Planning and End-of-Life Care
What is advance care planning?
A communication process rather than a legal process
A way of planning for future medical careA mechanism for ensuring that care
received matches patient’s values and goals
Consider a case
65-year-old man HIV+ for 15 yearsHx of non-Hodgkin's lymphoma, successfully
treatedOn HAART with hx of cognitive side effectsRecent hospitalization for liver failureNo family; partner deceased
Why is advance care planning important?
HIV/AIDS patients have an un-predictible course of illness
Builds trustHelps to avoid confusion and conflictPermits peace of mind
Concepts underlying advance care planning
Advance directiveHealth care agent or proxy Do not resuscitate (DNR) ordersPatient Self Determination Act
5 steps for successful advance care planning
1. Introduce the topic2. Structure the discussion3. Document patient preferences4. Review and update when clinical course
changes5. Apply directives when need arises
The EPEC Project, 1999, www.epec.net
Step 1: Introduce the topic
Allow adequate time & privacyAsk what the patient knows: “Have you
thought about having a living will?”Explain the process: “It’s helpful for us to
talk about it before making any decisions.”Determine comfort level: “Do you feel ready
to talk more about this today?”
Step 2: Structure the discussion (Five Wishes)
Who do you want to make health care decisions for you when you can't make them [proxy]?
What kind of medical treatment do you want or don't want?
How comfortable do you want to be? How do you want people to treat you? What do you want your loved ones to
know?
www.agingwithdignity.org
Identify a proxy decision-maker
Entrusted to speak for the patientInvolved in all the discussionsMust be willing, able to take the proxy role
Educate patient and proxy
Define key medical termsExplain benefits, burdens of treatments:
Life-support may only be short-termAny intervention can be refusedRecovery cannot always be predicted
Topics to considerPain managementArtificial nutrition and hydrationCPRMechanical ventilationBlood transfusionDialysisAntibiotics, HAART, other meds
Elicit patient values and goals
Ask about past experiences:“Did the staff ask you about living wills when you
were in the hospital last time?”“What happened with that conversation?”“Did your partner have a living will?”
Use values questions:“What makes your life worth living?”“How would you like to spend your last days?”“What are your spiritual beliefs that might affect
treatment choices?”
Elicit patient values and goals
Elicit patient values and goals
Describe potential patient situations:“Suppose you were very sick in the hospital again.
Would you want our focus to be more on your comfort or on your living longer?”
“Suppose your liver failure progressed. Would you want to go to the intensive care unit, or would you prefer to receive care at home but risk living a shorter time?”
Use an advance care planning document
A number are available:Five WishesLiving Wills
Easy to useReduces chance for omissionsPatients, proxy, family can take home
Step 3: Document patient preferences
Review advance directiveSign the documentationPut it in the patient’s chart or medical
recordEncourage patient to have copies to provide
to different medical settingsProxy may assist with this
Step 4: Review, update
Use clinical events as triggers to review documents
As disease progresses, allow for evolution in patient understanding and preferences
Discuss and document changes
Step 5: Apply directives when indicated
Review the advance directiveConsult with the proxyUse ethics committee for disagreementsCarry out the treatment plan
Pearls
Advance care planning can reduce family burden
Family members may not be the best proxies
Focus on what kind of care is desired rather than what should be withdrawn
Common pitfallsPatient reluctant to engage in ACPClinician reluctant to engage in ACPProxy not involved in discussionsPatient preferences are vague or nonspecificDirective is applied when patient is still
communicativeFamily disagrees with patient decisions
Common clinician assumptions
Patient/individual autonomyFull disclosure for informed decision-
makingControl over the dying processNo one should sufferWritten, formal agreementsFuture orientation
Alternative patient perspectives
Family has obligation to shoulder the burdenThe physician is the expert and should decideTruth of diagnosis is harmful or burdensome to
patientWe can’t control our fate; it’s God’s willAll life involves sufferingA person’s word is all that is neededIndirect communication; present orientation
Other topics to consider
AutopsyOrgan donation Burial / cremationFuneral / memorial servicesPermanency planning for
dependentsFinancial, legal affairsFinal gifts and bequests
Summary
Advance care planning is a fundamental palliative care skill
Advance care planning reduces family burden at end-of-life
The identification of the proxy is an important goal
The discussion is more important than the documents
HospiceProvides support and care for those in the
last phases of life-limiting illnessRecognizes dying as part of the normal
process of livingAffirms life and neither hastens nor
postpones deathFocuses on quality of life for individuals
and their family caregivers
COMMON HOSPICE DIAGNOSES1. Cerebral degeneration, dementia,
Alzheimer’s disease2. Parkinson,s disease3. Cerebrovascular disease4. Heart disease a. Valvular heart disease b. Coronary artery disease c. Congestive heart failure d. Arrhythmia 5. Chronic obstructive lung disease6. Malignancies
COMMON HOSPICE DIAGNOSES7. Failure to thrive8. End stage renal disease9. Cirrhosis10. Peripheral vascular disease with
gangrene11. Abdominal or thoracic aortic aneurism12. HIV
Core Aspects of Hospice
Patient/family focused InterdisciplinaryProvides a range of services:
• Interdisciplinary case management•Pharmaceuticals•Durable medical equipment•Supplies•Volunteers•Grief support
Diagnosis Death
Disease Progression Bereavement
Life-prolonging and restorative treatments
Palliative Care
Hospice
Continuum of End-of-life Care
Ferris F, Balfour H, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A model to guide patient and family care. Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106-23.
Ferris F, Balfour H, Bowen K, Farley J, Hardwick M, Lamontagne C, Lundy M, Syme A, West P. A model to guide patient and family care. Based on nationally accepted principles and norms of practice. J Pain Symptom Manage. 2002;24(2):106-23.
Additional ServicesHospices offer additional services,
including:•Hospice residential care (facility)• Inpatient hospice care•Palliative care •Complementary therapies•Specialized pediatric team•Caregiver training classes
Hospice Team MembersThe patient's personal physicianHospice physician (medical director)NursesHome health aidesSocial workersClergy or other counselorsTrained volunteersSpeech, physical, and occupational
therapists
Interdisciplinary Team Approach
The Hospice Team
Develops the plan of care Manages pain and symptomsAttends to the emotional, psychosocial and
spiritual aspects of dying and caregivingTeaches the family how to provide care Advocates for the patient and familyProvides bereavement care and counseling
Where Hospice is Provided
HomeNursing FacilityAssisted Living FacilityHospitalHospice residence or unitPrison, homeless shelter – where ever
the person is
Who Pays?Medicare Medicaid Insurance Private paySometimes a combination of these…
Admission Criteria
General•Life-limiting illness, prognosis is 6
months or less if disease takes normal course
•Live in service area•Consent to accept services
Palliative Care
Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life
The expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life
Curative and Palliative CareCurative care
•Focuses on quantity of life and prolonging of life
Palliative care •Focuses on quality of life and death, and
views death as a natural part of life
References Low-Cost Lessons from Grand Junction, Colorado, NEJM | September 29, 2010 |
Topics: Cost of Health Care, Thomas Bodenheimer, M.D., M.P.H., and David West, M.D. http://healthpolicyandreform.nejm.org/?p=12706&query=TOC
http://www.geripal.org/2010/09/rx-for-us-health-care-grand-junction.html New Yorker, Letting Go: What should medicine do when it can’t save your life?
Atul Gawande, August 2, 2010. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande#ixzz13Ni1HV00
Katerndahl, D. et al., Family Medicine Outpatient Encounters are More Complex than Those of Cardiology and Psychiatry, Journal of the American Board of Family Medicine. 2011; 24 6-15. http://www.jabfm.org/cgi/content/abstract/24/1/6?etoc
Bowman, Marjorie A, The Complexity of Family Medicine Care, JABFM. 2011; 24 4-5. http://www.jabfm.org/cgi/content/full/24/1/4?etoc
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