The Challenge of the End-of-Life Discussion: How and when should we

begin to broach the one subject we are trying to avoid with our terminally-ill

patient population”

Steven Ades, MD MPHUrsula McVeigh, MD

Dying from Advanced Cancer in the United States in 2013The Scope of the Problem

• Dartmouth Atlas Project (2010 Update)

Medical Resource Utilization Patterns among Medicare Beneficiaries

Ades S, NVONS 2013

Among 306 Hospital Referral RegionsDeath & Hospitalization

Quality of End-of-Life Cancer Care for Medicare BeneficiariesRegional and Hospital-Specific Analyses: Dartmouth Atlas Project 2010

29 %

61.3 %

% cancer patients dying in hospital

% cancer patients admitted to hospital last month of life

Ades S, NVONS 2013

Among 137 Academic Medical CentersDying in Hospital

Regional and Hospital-Specific Analyses: Dartmouth Atlas Project 2010

Fletcher Allen HC29.8 % deaths in hospital61.9 % admitted in last month

Ades S, NVONS 2013

Among 306 Hospital Referral RegionsICU in the last month of life

Regional and Hospital-Specific Analyses: Dartmouth Atlas Project 2010

24 % (FAHC13.8%)Ades S, NVONS 2013

Among 306 Hospital Referral RegionsHospice enrolment in the last month of life

55 % (46.6%)Ades S, NVONS 2013

Dartmouth Atlas Project: Conclusions

1. ~1/3 of patients with poor prognosis cancer spent their last days in hospitals and intensive care units.

2. ~10 % received advanced life support interventions such as endotracheal intubation, feeding tubes and cardiopulmonary resuscitation (CPR).

3. The use of hospice care varied markedly across regions and hospitals. In at least 50 academic medical centers, less than half of patients with poor prognosis cancer received hospice services.

4. In some hospitals, referral to hospice care occurred so close to the day of death that it was unlikely to have provided much assistance and comfort to patients.

Ades S, NVONS 2013

The impact of an EOL DiscussionCanCORS Cohort Study

• Target Pop: 1,231 patients, stage IV lung or colon ca• Main outcome: aggressiveness of EOL care received

Mack J, et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

EOL DiscussionsAre they really taking place? (CanCORS)

• Target Pop: 2,155 patients, stage IV lung or colon ca2003 – 2005North Carolina, LA County, Northern Ca, Iowa, Alabama (5 large HMOs, 15 VHA sites)

• Main outcome: Incidence of EOL care discussions• Design: prospective cohort

Mack JW et al, Ann Int Med 2012Ades S, NVONS 2013

EOL DiscussionsAre they really taking place? (CanCORS)

• 73 % (1,573 pts) had EOL care discussions– 87 % among 1470 pts who died at f/u, median 33 days

before death– 41 % among 685 pts who were alive

• Audit of initial 1,081 EOL discussions– 55 % occurred in hospital

• 85 % (1,823 pts) had medical oncology records: documented EOL care in only 27 %

Mack JW et al, Ann Int Med 2012Ades S, NVONS 2013

The EOL Discussion: Impact on Patient & CaregiverCoping with Cancer (CwC)Cohort Study

• Target Pop: 332 dyads of terminally-ill cancers pts and caregivers

• Follow-up: enrollment to death (median 4.4 mo)

• Outcomes:– Aggressive medical care– Hospice– pt mental health– caregiver bereavement adjustment

Final week of life

Wright, A et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

The EOL Discussion: Impact on Patient & Caregiver – CwC Study

Wright, A et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

The EOL Discussion: Impact on Patient & Caregiver – CwC Study

Wright, A et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

The EOL Discussion: Impact on Patient Care - CwC Cohort Study

Wright, A et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

The EOL Discussion: Impact on Caregiver CwC Cohort Study

• Caregivers of pts who received aggressive care at higher risk of:– Major depressive disorder (OR 3.37)– Experiencing regret– Feeling unprepared for the pt’s death– Worse QOL

• Pt QOL near death bereaved caregiver QOL

Wright, A et al. J Clin Oncol 2012; 30:4387-95Ades S, NVONS 2013

Outline

• What is an end of life conversation?– What works?

• Impact of prognostication and prognostic understanding on care received at the end of life

• Present a cognitive framework for cultivating prognostic awareness over time

End of Life Discussions:What do we want this to achieve?

• Quality end of life care: – Don’t want people to receive non-beneficial care and

burdensome therapies near the end of life– We want people to achieve, by their measure, “a good death”– Smooth and timely transition of goals of care based on

prognosis and preferences/values• Transition of goals from disease-focused care to comfort and allowing

a peaceful death• Barriers: practical and psychological

– Ambiguity and Ambivalence • Moving beyond advance directive: instructions for the very

end of life– disease preparedness: navigating serious illness

Disease Preparedness

• Disease-specific advance care planning• Prognosis is not just about mortality, it is

about what to expect from illness

Kutner, 1999

Patients are ambivalent about receiving prognostic information

What percentage of patients want their doctor to be honest?

• 100%

What percentage of patients want their doctor to be optimistic?

• 91%

Relationship Between Cancer Patients’ Prediction of Prognosis and Their Treatment Preferences

• Prospective cohort study: SUPPORT Trial: Phase 1 and phase 2

• 917 patients with stage III-IV NSCLCa or colon ca with liver mets

• Average 50% 6 month survival

JAMA. 1998;279(21):1709-1714. doi:10.1001/jama.279.21.1709

Relationship Between Cancer Patients’ Prediction of Prognosis and Their Treatment Preferences

Optimistic

Pessimistic

JAMA. 1998;279(21):1709-1714. doi:10.1001/jama.279.21.1709

When doctors estimate a poor prognosis:

Optimistic patients are 8.5 times more likely to favor aggressive life-extending therapy than those less optimistic

Relationship Between Patients’ Estimation of Prognosis and Their Treatment Preferences

Prognosis Disclosure Intervention Failed

• Understanding of prognosis effects EOL treatment preferences and did not effect survival – ie. More realistic understanding resulted in less non-

beneficial aggressive care at EOL

• Telling people their prognosis did not effect EOL treatment preferences

• Intervention failed:– Not just telling people

• Who? How?

Patient’s Expectations about Effects of Chemotherapy for Advanced Cancer:

Inaccurate• CanCORS: 1193 patients with metastatic lung

or colorectal cancer

• Majority of patients did not understand that chemotherapy was not at all likely to cure their cancer– 69% of patients with metastatic lung cancer– 81% of patients with colorectal cancer

Weeks JC et al. NEJM, 2012

Decision aid about prognosis with and with treatment for metastatic cancer did not

improve understanding of terminal illness

Despite an explicitly stating that current chemotherapy options for metastatic disease were not offered with curative intent, all patients reported that metastatic NSCLC was curable after reviewing the decision aid

Leighl NB. Enhancing treatment decision-making: pilot study of a treatment decision aid in stage IV non-small cell lung cancer. Br J Cancer, 2008.

Understanding Prognosis…

is more than just understanding information

The only intervention that has been shown to impact patients understanding of prognosis was the Mass General trial on early palliative care for NSCLCa

Early palliative care improved understanding of prognosis and

treatment intent• Randomized control trial of early palliative care vs standard

onc care• 151 patient, single center trial• Intervention: referral to PC within weeks of diagnosis• Initial data review found:

– Improved quality of life, lower rates of depression and even prolonged survival

– Less use of aggressive therapies near the end of life• Baseline and longitudinal assessment of perception of

prognosis and goals of cancer treatment

Temel J et al. Early palliative care for patients with metastatic non-small cell lung cancer. NEJM, 2010Temel J et al. Longitudinal perceptions of prognosis and goals of therapy in patients in metastatic non-small cell lung cancer: results of a randomizsed study of early palliative care. JCO, 2011

Baseline perceptions of prognosis and goals of treatment

Temel J S et al. JCO 2011;29:2319-2326

Accurate Understanding

Changes in perceptions of prognosis and goals of treatment

Temel J S et al. JCO 2011;29:2319-2326

©2011 by American Society of Clinical Oncology

End of Life CareVariable Standard

CareN (%) or Median

Early Palliative Care N (%) or

Median

p-Value

Aggressive care at EOL 30/56 (54%) 16/48 (33%) 0.05

Survival, median months 8.9 11.6 0.02

Received hospice care 41/66 (62%) 40/58 (69%) 0.46

Received hospice >7 days before death

22/65 (34%) 34/57 (60%) 0.006

Median days on hospice 9 (1-268) 24 (2-116) 0.01

Documented Resuscitation Preference

11 (28%) 18 (53%) 0.05

What is in the “palliative care syringe?”

Aiding prognostic awareness – Cognitive and emotional processing– How people integrate knowledge that an illness is

terminal and how that impacts treatment decisions

Definition of Prognostic Awareness:A patient’s capacity to understand prognosis and

the likely illness trajectoryJackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013

Cultivating Prognostic Awareness

• Communication model- expert opinion, not empirically tested

• Foundation Principle:– Dr. Avery Weissman: “middle knowledge”– Denial is not sign of unhealthy coping, but rather a tool for

patients to safely and slowly integrate reality of death over time

– Patient move in and out of both denial and acceptance of impending death

Jackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013

Q: What about denial? That’s a powerful emotion, and it must make your job difficult.

A: Denial has an important role in coping and living as best one can. Denial or disbelief is very common for anyone diagnosed with a life threatening condition and can be a helpful protective mechanism. Adjusting to difficult news is a process and with each passing day people are able to let in information that previously may have been too difficult to bear. As caregivers, it is important that we respond to people based on where they are in that process.

-Barb Segal, RN, MS CNSClinical nurse specialist in Palliative Care and one of five finalists for the national Compassionate Care Awards, sponsored by the Schwartz Center for Compassionate Healthcare 2013. FAHC ONE Newsletter interview.

Model of Coping with Serious Illness: a pendulum in which the patient's expressions swing through varying degrees of prognostic awareness

Jackson VA et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. JPM, 2013

Jackson VA. JPM, 2013

Advanced Care Planning• Mixed reviews about living wills

– Limited help in situation short of “terminally ill with no hope”

– Difficult to predict treatment preferences in the future and state preferences for all possible events

• Strong evidence to support benefit of “in advance” end of life discussions

• Redefining the “planning” in advanced care planning: a process more than a decision– Think about types of health care decisions in the future– Identify health care agent (DPOA-HC)– Conversation with DPOA-HC regarding values– Conditions under which goals of care would shift– Establishing “leeway”– Advise there is a time where CPR is not recommended

Sudore RL. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals of internal medicine. 2010

Aiding Prognostic Awareness

• Assess understanding of prognosis (your assessment, their assessment)

• Present buy-in for discussing end of life planning- feel comfortable with “transition language”

• Focus on goals and values over concrete decisions, in the beginning

• Recognize disbelief as a barrier to end of life planning