End of Life Care: Discussions and Medical Decision Making

End of Life Care: Discussions & Medical Decision Making

Christie Izutsu

Resident Physician, PGY-2

Department of Internal Medicine

University of California, San Diego

Case Discussion

23 M born prematurely at 24-28 wks gestation

• Birth complicated by intraventricular hemorrhage resulting in developmental delay

• Received several blood transfusions resulting in contraction of HIV at 6 months of age

First visit to Owen adolescent clinic, 1/31/06

• M184V, D67N, & T689D

• K103N, Y188L

• No PI mutations

Case Discussion: Continued

1/17/07 – clinic visit:

• Labs indicate probable development of resistance (CD4 103, VL 53892) – repeat resistance testing more consistent with not taking meds

• Meds:

Epzicom/abacavir/3TC

Norvir/ritonavir

Viread/tenofovir

TMP/SMX DS

Reyataz/atazanavir

December 2009 – clinic visit:

• Hospitalized for seizures

• Per brother was diagnosed with progressive multifocal leukoencephalopathy (PML, +JC virus in CSF)

• Urine tox +amphetamines, +benzodiazepines

• EEG without seizure activity

• Serum CrAg negative


2009-2011 – ongoing medication adherence issues:

• Moving back & forth between Northern California

• Intermittent substance abuse (meth, marijuana)

• Insurance problems (ADAP & Ryan White funding lapsed 3/2010)

• Misplaced prescriptions

• Patient perspective - “did not have a clear understanding of risks associated with his non-compliance to meds”


2009-2011 – ongoing medication adherence issues:

• Discontinued ARVS 1/2011 due to nonadherence and increasing resistance pattern

• Resistance testing: – 12/2008 (on Atripla): Resistant 3TC, FTC, DLV, EFV, NVP

• NRTI: D67N, T69D, M184V; NNRTI: K103N, Y188L; PI: none

– 2007 (not on meds): pan-sensitive

– 5/23/2002 (on Trizivir): Resistant 3TC, ddC, AZT, DLV, EFV, NVP

• restarted Atripla 7/2011, realized he had “AIDS”


Social history – complicated family dynamics:

• mother passed due to ruptured aneurysm peri-partum; “misses the mom he never knew”

• Moved to San Diego 2/2010 from Bakersfield; previously living with uncle who passed (diabetic on dialysis)

• Moved in with GM, father, two uncles (Guillermo & Juan), one of whom assisted with meds

• Father s/p CVA and recent coma, now “like a baby”

• Education up to 11th grade, wanting to get GED


Progression through 2012:

• Started on new ARV regimen

• Developed anemia of chronic disease & worsening of thrush

• Hospitalized for pneumonia at end of 2011

• Hospitalized 7/2012 for GI bleed, coagulopathy and duodenal obstruction; persistent vomiting – started on MAC therapy

• Admitted to Hillcrest next week, 7/23-7/25, for emesis, dehydration; thought to be due to MAC


8/2-8/11/12 – clinic to hospitalization:

• Readmitted for tachycardia, bloody diarrhea; ARVs discontinued

• Stool AFB positive, likely disseminated MAC

• Also diagnosed with:

– severe malnutrition (188 87 lb over 2 yrs)

– hypogonadism

– peridontitis


Progression through 1/2013 – clinic visits:

• Worsening diarrhea, now in diapers

• More weight loss – now 83 lb

• requiring assistance to shower

• new abdominal distention & lower extremity/scrotal edema

• uncles note worsening functional decline – using walker for ambulation due to leg weakness

– R>L UE tremor which makes feeding himself difficult


ARV Clinic, 1/5/12 – ARV history:

• 7/11-present: Atripla

• 2/09-4/10: EPZ+RAL+ETR

(continued viremia, questionable adherence)

• 10/07-2/09: Off ARVs

• 3/05-10/07: EPZ+TDF+ATV/r

(persistent viremia, likely non-compliant)

• 3/04-1/05: FTC+TDF+ABC+ATV/r

• 10/01-1/04: Trizivir

(undetectable, then rebound viremia)

• 11/98-3/99: D4T+NFV+EFV (continued viremia)

• 5/96-7/98: 3TC+d4T

• 12/94-1/96: Ddi+AZT+NVP

• 8/93-3/94: AZT


2/1/12 – ARV Clinic:

• “understands why he can no longer use Atripla and understands he has developed resistance to certain medications due to non-compliance”

• “based on his genotype, Complera, Prezista/Norvir appears to be a reasonable option for this patient which will help with adherence and this regimen should have full antiretroviral activity based on the past genotype resistance test.”

• “MedAction plan should help the patient stay adherent with his regimen”

• “Expect a 1-2 log reduction in VL after 2-4 weeks on this new regimen, and should provide an excellent long-term virologic response, as long as patient continues to be adherent to the regimen.”


CD4 count, 3/2010-1/2013

CD4 Percent, 3/2010-1/2013

Viral load

1/15-1/28/13 – hospitalization:

• Admitted following posturing of arms and nonresponsiveness

• Emesis during LP, intubated for airway protection

• 1/17: bronchoscopy revealed exophytic lesion of right main stem bronchus; galactomannan (+), cytology (-)

• 1/19: evaluated by neuro, thought to have HAND (HIV associated neurocognitive disorder)

• Started on empiric meningitis coverage; all cultures (-)

• CT abdomen/pelvis with new and enlarging hypoattenutating lesions in the liver & spleen, diffuse colitis and lymphadenopathy; broadened to vancomycin & pip/tazo

• continued on ARVs, MAC coverage and OI prophylaxis

• 1/21: amphotericin added, discontinued 1/23



• Developed new thrombocytopenia

• Noted to have ongoing aspiration events – per speech eval, unsuitable for oral intake; NG placed temporarily

• 1/23: family meeting to discuss goals of care

– Discussed severity of condition

– Liver lesions suspicious for malignancy, unable to biopsy

– Believe it is time to consider other options to minimize “suffering”

– Current options included prolongation of life v providing quality of life measures to improve comfort and enjoyment in last phase of life



• 1/24/13 – DNR/DNI order placed

• Over the next few days, Howell consulted; priest present

• 1/28/13 – noted to have agonal breathing, passed at 3am

• Autopsy declined by father – previously permitted by sister who “wanted to help advance medicine for her children”


Dealing with End-of-Life: Pre-ARV era

• Number 1 cause of death of Americans aged 25-44 in 1997

CDC “Mortality Slide Series”

Dealing with End-of-Life: Pre-ARV era

• Number 1 cause of death of Americans aged 25-44 in 1997

• Death often before knowing diagnosis

• Focus on quality, rather than quantity of life

• Eventually shifted to emphasis on the quality of one’s death

– Due to increased acceptance of death in young healthy individuals

– “Sharing a common fate”

– Desire to control how one dies Kobayashi JS. Bulletin of the Menninger Clinic. 1997;61(2):146-188.

A Different Death Experience

• Multiple losses – friends, partners, employment, future, independence, self-esteem, meaningfulness in life

• Often results in complicated grief

• High rates of depression

• “Hidden grievers”

Death in the era of Treatment Advancements

CDC “Mortality Slide Series”


Death still exists

• Treatment failures – Declining benefits of treatment with time

– Intolerable side effects

– Inability to adhere due to demands & complexity (significant portion of patients not 100% adherent)

• 75% adherence rates in 2011 (UCSF study)

• 46-88% in 2001

• Inaccessible treatments (economic, social – providers may not prescribe due to concern for adherence)


Feelings surrounding death:

• Seems “more unusual” – avoidance and disbelief when death occurs

– AIDS now a “chronic illness”

• Death anxiety – “longer period of uncertainty and anticipatory grief”

(Demmer)

– Greater variability in course of illness

– Treatment can fail at any time

• Caregivers – more emotional & physical exhaustion

What do you feel is the largest barrier to discussions about end-of-life care?

a) Timing – not sure when to bring this up

b) Patient discomfort

c) Clinic appointment constraints

d) Lack of training

Difficulties Discussing Death

Clinician perspectives:

• Unsure when to discuss end-of-life issues

• Not ready for patients to die (Curtis et al) due to treatment advancements

• Still with feelings of helplessness, frustration – Close relationships with long-term pts so more intense

feelings of loss

– Advancements = new challenges, don’t know how to deal with them

• Lack of training for paraprofessionals

Difficulties Discussing Death

Patient perspectives:

• Physician and patient not on same “page”

– Not wanting to face reality

– Complicated process

– Family opinion

• Lack of knowledge

– Understanding what actually happens

– Statistics surrounding resuscitation

“Barriers to communication”

Curtis et al, 1996:

• Focus groups of 47 AIDS patients and 19 physicians

• Physician issues – discomfort, time pressures during appt, fear of undermine hope, role to make patients feel better, young age of patients

• Patient issues –having AD meant no further discussions were needed, didn’t want preferences “set in stone”, felt discriminated against

Curtis et al. J Gen Intern Med. 1997;12:736-41.

“Barriers to communication”

Curtis et al, 1996:

Curtis et al. J Gen Intern Med. 1997;12:736-41.

One major concern was that “discussing end-of-life care may be harmful to the patient and may even hasten death”

SUPPORT Study

• “timely provision of prognostic information by trained nurse”

• Less than 50% of physicians knew when patients changed their code status to DNR

• Caveat – did not include HIV positive patients

What percentage of your patients have advance planning documents written up prior to actually needing end-of-life care?

a) More than 95%

b) 75-95%

c) 50-75%

d) 25-50%

e) Less than 25%

Improving Communication: HIV-Specific Advance Directive

Singer et al. at University of Toronto, 1995 •203 individuals randomized to generic v HIV-specific living will (50 v 52) •101 received both •77.2% v 22.8% preferred the HIV-specific document, (p<0.001) •ADAQ (Adv Directive Assessment Questionnaire) compared the two –mean ADAQ score slightly higher for HIV document (68.5% v 66.2%, p=0.051 •May not be document itself, but translates to point that advanced planning should be tailored to patient

Creating an Advance Directive: HIV-specific documents

Singer et al. J Gen Intern Med 1997;12:729-735

Advance directive: disease-specific study

Figure 1: Treatment preferences based on Centre for Bioethics Living Will (Singer et al)

Figure 2: Treatment preferences based on the HIV Living Will (Singer et al)


• Generally, prefer less aggressive treatment if illness more advanced

• Within specific illness scenarios, little variation in preferences for different therapies

• Advanced directives are NOT meant to be a substitute for end-of-life discussions


Improving Discussions

What clinicians can do:

• Act as “fellow travelers who can help grievers make sense of issues that may impact their grief”

– Information and warnings about what to expect

• Open communication

• Active coping strategies

• Structured deliberation – (Emanuel LL) small choices rather than large ones all at once

Ongoing discussions:

• “Learn why patients express certain preferences rather than what those preferences are” (Forrow L.)

– Outcomes may drive preferences (Rosenfeld, et al)

– Similar concept as Singer study

• Realize that some patients will continue to resist despite our best efforts

Improving Discussions

President’s Emergency Plan for AIDS relief

HIV Palliative Care:

• Palliative care begins at time of diagnosis

• Clinical, psychological, social and spiritual care

Children/Youth and HIV

New York Times, Feb 26, 2008

What do you feel is the most important aspect of HIV care in children/youth?

a) Medication adherence

b) Understanding the disease & its progression

c) How the child feels about the disease

d) How the disease impacts their relationships with others

Children/Youth and HIV

• How could we explain children/youth that they are different, and unless they take multiple pills every day they would die?

• Common terminology among clinicians treating for growing and youth living with HIV are: treatment experienced, HIV resistance

• Not very often stated or address are: stigma and isolation felt by these patients

Children/Youth & HIV: Statistics

Children/youth living with HIV:

• WHO – 3.4 million as of 2011

• UNAIDS – as of 12/2003, children < 15 yrs of age:

– 700,000 newly diagnosed = 13% of all new cases

– 500,000 died that year alone

• Older stats: through 2002, 9300 Americans < 13

– 92 new cases of pediatric AIDS in 2002

– 3x as many HIV cases

• Death rates declined 68% from 1998-2002 in number of children/youth who died from AIDS

Children/Youth & HIV: Progression

Two general patterns:

• 20% - serious disease in first 12 months

– Death usually by age 4

• 80% - slow rate of progression

– May not see serious symptoms until adolescence

– Often with delayed growth & milestones

– Opportunistic infections: • PCP is the leading cause of death in children

• CMV – primary infection rather than reactivation

• LIP (lymphocytic interstitial pneumonia)

• Severe candidiasis

Children/Youth and HIV: Discussions

Talking to children/youth about their disease:

• Tailor to age & development

• May not be a “right” age

Children/Youth and HIV: Discussions

Factors influencing disclosure:

Figure 2 (Vaz et al.)

Children/Youth and HIV: Concerns

Issues that affect children/youth with HIV:

• Medications – who to tell at school

• Friends

– Psychosocial variables & immune response • Increase in CD4% by ~5.55% with recent disclosure

(Sherman et al, 2000)

• Being “different”

– Anger, withdrawal, rebelliousness

– Refusal to take medications

• Socially isolated & restricted in activities

Children/Youth and HIV: Medication Adherence

Barriers to medication use:

• Insurance and financial concerns less prominent

• Otherwise similar to adults

• Results in complications and resistance

Table 2. Barriers to Medication Adherence for full Study Sample & By Route of Infection (MacDonell et al.)

Spirituality

• Spirituality is part of comprehensive palliative care

• Associated with health outcomes

– McClain C et al (2003) Lancet 361:1603 – spiritual well-being correlated with less depression, hopelessness, SI; higher social support

– Existential well-being and HIV symptoms correlate with psychological well-being

What percentage of your patients have discussed spirituality with you and the

role this plays in their healthcare?

a) Greater than 95%

b) 75-95%

c) 50-75%

d) 25-50%

e) Less than 25%

Spiritual Distress

• Distress comes from fear of dying, conflict of beliefs and same reasons make addressing death difficult

Suggestions for Discussing Spirituality

Lo, et al. JAMA. 2002;287:749-754.

Suggestions for Discussing Spirituality

Lo et al:

• Clarifying religious statements

• Responding to statements that may indicate spiritual concerns

• Responding to religious reasons for rejecting medical recommendations

• Listening – nonjudgmentally

• Recognizing rituals, symbols, icons

Addressing Spiritual Needs

Puchalski et al – FICA format:

• F – faith (belief, meaning)

• I – importance (influence on life)

• C – community (who they belong to)

• A – address/action in care (how we address)

Community Resources for Addressing Spiritual Needs/Distress “Heart of Medicine”

Books on Life & Death: Recommended by Rev Kovach, MD

At the end: Medical Decision Making

Decisions at end-of-life:

• Can be difficult if poor communication ahead of time

• Most times left to family (Kelly B et al)

– Involved 60-80% of the time

– Unfortunately family often unsure of patient wants

• Difficult to decide when to stop pursuing active measures in hospitalized patients

– Stepwise process (Stroud)

Figure 1, Thelen M

Table 1, Thelen M

At the end: Medical Decision Making

Closing Thoughts & Reflections

• Medicine is a balance of science & art

• Our compassion and caring connections with

patients can have an immense impact on patient

perceptions & influence the ultimate outcome of

one of the biggest events in life

Resources Demmer, C. “Dealing with AIDS-related loss and grief in a time of treatment advances.” Am J of Hospice & Palliative Care. Vol 18, No

1, Jan/Feb 2001.

Singer et al “The HIV-Specific Advance Directive.” J Gen Intern Med 1997;12:729-735

http://www.slideshare.net/ucsdavrc/addressing-the-spiritual-and-emotional-needs-of-hiv-patients

Wilson, I. “End of Life Care in HIV Disease.” JGIM. Vol 12, Dec 1997.

Forrow L. “The green eggs and ham phenomena. Hastings Cent Rep. 1997;24:S29-32.

Rosenfeld, et al. “End-of-Life Decision Making. A Qualitative Study of Elderly Individuals.” J Gen Intern Med. 2000; 15:620-625.

http://www.state.gov/documents/organization/64416.pdf

“Spiritual Issues in HIV/AIDS Palliative Care.” The Center for Palliative Care Education.

Curtis JR, Patrick DL. “Barriers to Communication About End-of-Life Care in AIDS Patients.” J Gen Intern Med. 1997;12:736-741.

Lo et al. JAMA. 2002;287:749-754.

Puchalski CM, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Pall Med 2000;3:129-37.

CDC Mortality Slide Series. “HIV Mortality Slides.”

WHO. “Antiretroviral therapy for HIV infection in infants and children: Towards universal access. Recommendations for a public health approach: 2010 revision”

Vaz et al. “Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa.” AIDS Patient Care and STDs. Vol 24, Num 4. 2010.

MacDonell et al. “Barriers to Medication Adherence in Behaviorally and Perinatally Infected Youth Living with HIV.” AIDS Behav. (2013) 17:86-93.

Kovach, DA. “Caring for the whole person with HIV: Mind, Body and Spirit.” The Permanente Journal. Spring 2008. Volume 12, Number 2.

Sherman et al. “When Children Tell Their Friends They Have AIDS: Possible Consequences for Psychological Well-Being and Disease

“Please Talk to Kids About AIDS”. Hennessey et al. (documentary, vineeta.org)

Womenshealth.gov “AIDS”


















Resources “Talking with Children about Sex & AIDS: At What Age to Start?” New York Times. Feb 26, 2008.

Childrennow.org “Talking with Kids About Tough Issues: HIV/AIDS”

Kelly B, et al. “Systematic Review: Individuals’ Goals for Surrogate Decision Making.” JAGS. 60: 884–895

National Institute of Allergy and Infectious Disease (NIAID) website. “HIV/AIDS: HIV infection in infants and children” http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Population%20Specific%20Information/Pages/children.aspx

Okonsky, J. “Problems taking pills: understanding HIV medication adherence from a new perspective.” AIDS Care. Vol 23, Issue 12. 2011.

Univ of Toronto Joint Centre for Bioethics. “HIV Living Will.” http://www.jointcentreforbioethics.ca/tools/documents/jcb_livingwill_hiv.pdf

“The SUPPORT Principal Investigators. A Controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).” JAMA. 1996;274:1591-8.

http://theologyforum.files.wordpress.com/2012/12/light-shining.jpg

http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Population Specific Information/Pages/children.aspx

http://www.jointcentreforbioethics.ca/tools/documents/jcb_livingwill_hiv.pdf




End of Life Care: Discussions and Medical Decision Making

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