LISA MARR, MDSection Chief, Palliative Care

Department of Internal MedicineUniversity of New MexicoLMARR@SALUD.UNM.EDU

Communication in End of Life Care: What’s New?

Disclosure

No conflicts of interest to disclose

RATIONING, DEATH PANELS, AND GRANNY-OH MY!

OUR STORY BEGINS IN JULY OF 2009…..

Health Care Debate 2009

Health Care Bill (HR 3200): 7/09

“Advance Care Planning Consultation”: A senior and a medical

practitioner (MD, PA, NP) discussing “advance care planning, if…the individual involved has not had such a consultation within the last 5 years.” Reimbursement by

Medicare Voluntary

“Advance Care Planning Consultation”, p. 425

Explanation by the practitioner of “…advance care planning, including key questions and

considerations, important steps, and suggested people to talk to”

“…advance directives, including living wills and durable powers of attorney, and their uses”

“…the role and responsibilities of a health care proxy”

“Advance Care Planning Consultation”, p. 425

Explanation by the practitioner of “…the continuum of end-of-life services and supports

available, including palliative care and hospice, and benefits for such services and supports that are available under this title”

“…orders regarding life sustaining treatment or similar orders.”

“Provide a list of national and State-specific resources to assist consumers and their families with advance care planning”

Euthanasia? 7/09

“This provision might start us down a treacherous path toward government-encouraged euthanasia if enacted into law.”

House Minority Leader John Boehner

Death Panels? 8/09

“And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.”

Former Alaska Governor Sarah Palin

Rationing care? 8/09

“[I]t was President Obama himself who suggested that seniors who don’t have as long to live might want to consider just taking a pain pill instead of getting an expensive operation to cure them,” said Huckabee.

Under President Obama's health care plan, (Ted) Kennedy would have been told to go home to take pain pills and die" during his last year of life, rather than… freely d(oing) what most of us would do. He chose an expensive operation and painful follow up treatments.”

Former Arkansas Governor Mike Huckabee

Newsweek 9/09

2006 health care expenditures: >$2 trillion

Population > 65 yo: 2006: 37.3 million 2030: 71.5 million

30% of Medicare funds each year are spent on terminal care for 5% of the program's patients. Nearly all Medicare

beneficiaries spend some time in hospital in last year of life

78% of last-year-of-life expenses occur in the month before death (primarily secondary to life sustaining care)

Rationing- 1962 Dialysis “God Squads”; 2009: Insurance, Transplant Committees, No money/No Care, Non-citizens, Clinical Trials, Oregon Health Plan, etc.

“Americans want the best, they want the latest, and they want it now”

Questions:

Do end of life conversations help or harm patients? What is the evidence?

Example: Code status/DNR discussions Communication: What works? What doesn’t?

Review an 8 step process to discuss code status

WHY DISCUSS THE FUTURE?

Setting the Stage

Do patients want to discuss EOL care?

<50% patients who want to have EOL care discussions with physicians do so (cancer and non-cancer)

Advanced Cancer: 25% of patients with incurable cancer aren’t told that65% no time-based prognosis discussed 1/3 of patients receiving chemotherapy believe its intent is to cure

them20% of patients receive chemo in the last 3 weeks of life.

Providers less likely to have EOL discussions for patients with non-cancer illnesses

Matsuyama J Clin Oncol 2006. Hagerty Ann Oncol 2005. Ray A J Palliat Med 2006. Zhang ASCO 2008. Mitchell Supp Care Cancer 2007.

Do we do a good job of discussing the future?

As a profession – no. Why not? Perceived lack of training Stress Take away hope No time to address emotional needs Harm patients (they’ll give up and die sooner) Hurt our relationship with the patient What if we’re wrong? Uncertainty about prognosis It’s emotionally difficult for us Explicit requests by patient/family not to discuss

This is despite strong evidence patients benefit from this and consistent evidence they want to talk about it

Hancock Palliat Med 2007.

Elephant in the Room

Prognosis affects choices about CPR

People can make better medical decisions (better = more informed) when they know their prognosis 41% of elderly patients would want CPR for an in-

hospital cardiac arrest Decreases to 22% when told their probability of

survival to discharge was “10-17%” 11% with a chronic/terminal illness (life-expectancy

<1 year) would want CPR Decreases to 5% when told prognosis “0-5%”

probability of survival to discharge

Murphy et al. NEJM 1994

Prognosis affects choices about EOL care

Hospitalized cancer patients with prognosis <6 months Those who thought prognosis >6 months were

much more likely to… Want life-prolonging treatments Want ‘aggressive’ treatments (ICU, ventilators) Die on the vent

…Than those who thought prognosis was <6months.

Survival was the same in both groups

Weeks et al. JAMA 1998.

Coping With Cancer Study (CWCS)

Coping with Cancer Study: 332 patients with metastatic cancer and progression through

1st-line chemo and their caregivers (dyads) NCI/NIMH funded, multisite, prospective cohort

71.3% white; 14.8% Black; 11.9% Hispanic; 1.7% Asian and 51.1% male

Median survival: 4.4 months 123/332 (37.0%) reported EOL discussions with MD at

baseline Sicker patients: lower performance status, higher

symptom burden, shorter survival time No difference in age, sex, race, religion, education, cancer

type, marital status, race/ethnicity, health insurance status

Wright et al. JAMA 2008

Do EOL conversations cause emotional harm?

CWCS: Discussions about EOL were NOT associated with feeling: “Depressed”, “sad”, “terrified”, “worried” or meeting

DSM criteria for mental disorder

Wright et al. JAMA 2008

Care choices affected by EOL discussions

Patients who had discussions about EOL with physicians

More likely to: Accept diagnosis as terminal (59.2% vs. 28.7%) p<.001 Prefer medical treatment focused on relieving pain and

discomfort over life extending therapies (52.9% vs. 28.7%) p<.001

Complete a DNR order (63.0% vs. 28.5%) p<.001Less likely to:

Receive mechanical ventilation (1.6% vs. 11.0%) p=.02 Undergo resuscitation effort (0.8% vs. 6.7%) p=.02 Be admitted to an intensive care unit (65.5% vs. 44.5%) p=.03

Wright et al. JAMA 2008

QOL and aggressive care

Quality of Life In final week of life, QOL decreased with increasing

number of aggressive interventions (even after adjustment for severity of illness) (6.4 vs. 4.6, p=0.1)

In final weeks of life, QOL increased with hospice care Longer on hospice, higher reported QOL (6.9 vs. 5.6,

p=0.1)

Wright et al. JAMA 2008

Do conversations about EOL harm families?

No! If physicians discussed EOL options/the future with patients, bereaved families reported: Higher satisfaction with communication from

physician, comfort of patient Better understanding of “what to expect” as family

member died

Teno J et al. JAGS 2007. Engel SE et al. JAGS 2006.

CWCS: Caregiver Outcomes

Caregivers of patients who received aggressive care in last week of life were more likely to: Develop Major Depressive Disorder (OR 3.37) Experience regret (p=.01) Feel unprepared for patient’s death (p<.001) Have poorer overall QOL (p=.004) Have poorer self reported health (p=.04)

Wright et al. JAMA 2008

CWCS: Caregiver Outcomes

Better QOL in patients associated with Better overall QOL (p=.001) Self reported health (p=.004) Physical functioning (p=.02) Mental health (p=.04) Felling better prepared for the death (p=.002) Less regret (p<.001)

In caregivers at 6 month follow-up“Cascading benefits” for patients and

caregivers Wright et al. JAMA 2008

EOL discussions decrease health care costs

CWCS: 188/603 participants (31.2%) reported EOL discussions at baseline no difference in cancer type, recruitment site,

treatment preferences, illness acknowledgement, SESQuestion: Do end of life conversations

result in cost savings (aggregate costs)? Did not have discussion:

$2917 ($285/day) Had discussion:

$1876 ($177/day)

Zhang B et al. Arch Intern Med. 2009

EOL discussions decrease health care costs

EOL discussion reduced cost by 35.7% (less use intensive interventions) Higher medical costs associated with worse

physical distress (p=.003), worse overall QOL per caregiver (p=.006)

Survival was the same in both groups…..

Zhang B et al. Arch Intern Med. 2009

Copyright restrictions may apply.

Zhang, B. et al. Arch Intern Med 2009;169:480-488.

Association between cost and quality of death in the final week of life (adjusted P = .006)

Outcomes of EOL discussions

Patients who have EOL discussions with their doctors

More likely to: Have an advance directive Understand illness terminal Die at home Have EOL choices followed (i.e. DNR order in patients who

want to be DNR) Choose hospice

Improved QOL for EOL patients (sx relief, MD communication, emotional support, being tx with respect)

Decreased Major Depression in bereaved caregiversLess likely to:

Have a feeding tube

References 1-7

What do patients want to know?

Studied extensively in Western worldMostly cancer – although other diseases

representedPatients want

Realistic, truthful information What will happen is as important as time How they are told is as important as what they are

told Hope, optimism

How one is told

Loved ones presentAdequate timeAcknowledgment of emotional, spiritual,

existential impact of having a life-limiting disease

‘Attitude’ of the clinicianRespect for patient’s emotional state

Hagerty Ann Onc 2005. Clayton Supp Care CA 2005. Curtis J Palliat Med 2008.

Hope and Optimism

Qualitative research: Clayton Cancer 2005: Explored with advanced

cancer patients n=19 (& caregivers) how can clinicians can foster hope when they talk about future.

Major themes Emphasize what can be done Emotional support, care, dignity, listening, non-

abandonment Practical support (help in home)/Discuss day-to-day

living Truth-telling but ‘not blunt,’ leaving space for the

unanticipated

Hope & Optimism – What generates hope?

The top 4 hope-destroying actions by physicians Appeared nervous or uncomfortable “Gave my prognosis to my family, then gradually

told me” Used euphemisms “Avoided talking about the cancer and only

discussed treatment”Hagerty J Clin Oncol 2005

Hope & Optimism

“Hope” = a sense of receiving good care…“best” care – all the

right things are being done, non-abandonment, confidence and warmth with the physician, completeness of information, And NOT being told unambiguously “There is no

hope of recovery” These themes far out-shadow the way

preserving hope is often conceived: half-truths, concealing information, only positives

“Most patients…”

…means some patients Don’t want to talk about the future Don’t want straight-forward assessments of

prognosis Don’t want to talk about anything ‘negative’ Want us to promise them cure, recovery

…doesn’t necessary include the patient in front of us

What will happen…

…Is just as important as timeNear universal finding when looked at

Impact of illness & its treatment on their lives What to expect – treatment and functional courses True in cancer, CHF, COPD, dementia Near the end…

Places of death, impact of death on family, help they can get

Hagerty et al Ann Oncol 2005. Curtis et al. Eur Resp J 2004. Curtis et al. Chest 2002. Knauft et al. Chest 2005.

Can’t I just give him an Advance Directive?

Patient Self-Determination Act (PSDA) 1990 Requires that all Medicaid and Medicare

providers inform adult patients of right to: Participate in and direct their own HC decisions Accept or refuse treatment To prepare an Advance Directive (Living Will, POAHC) Be informed of healthcare facilities policies on these

rights

Can’t I just give him an Advance Directive?

Mixed results: Hospital LOS, place of death (home vs. hospital), costs of

hospital stay, medical treatments not affected by AD (ref. 19-27)

Teno JM et al. JAGS 2007 (retrospective) Less Life Sustaining Treatment, greater use hospice, less

likelihood of terminal hospitalization Families : fewer concerns about physician communication; more

aware of “what to expect” with the dying process BUT

¼ unmet pain needs ½ inadequate emotional support for dying person 1/3 inadequate family support

Advance directives should be the start of a conversation, not the end…..

“DO YOU WANT US TO DO EVERYTHING?”

Discussions About Code Status

Case 1: RF

A 68 yo man is newly diagnosed with metastatic hepatocellular cancer, alcohol related liver failure, and impending kidney failure.

Because of his poor functional status (ECOG 3-4) and organ failure, he is not a candidate for chemotherapy. The oncologist told him this.

Prognosis: days to a week or twoMedicine Team: “He seems to have unrealistic

expectations. I asked him “Do you want us to do everything? and he said “Yes”. So he’s a full code.”

CPR- How effective is it?

Inpatient setting: 40% survive the CPR effort 1/3 survive to leave the hospital (i.e. 14% of total) So 86% of patients who code in hospital die in the

hospital More successful if CPR is in OR, ICU, Cath lab

Depending on study, 7-26% survive a CPR effort

MH Ebell et al. J Gen Intern Med. 1998 (Meta-analysis); Tresch D et al. JAGS 1994; Warner SC and Sharma TK. Resuscitation 1994.

CPR-How effective is it?

Low likelihood of survival if: Sepsis

1/73; 0/42 survived CPR effort Metastatic cancer

0-14% survived CPR effort Renal failure Need for vasopressors or inotropes

2/55 survived CPR effort (both had reversible conditions, i.e. AMI, arrythmia)

Nursing home residents 0-1.7% survive CPR effort

Age alone not a RF References 30-38, 41

Outcome of CPR in the ICU Setting

114 MICU patients underwent CPRMean age 59

25% malignancy, 18% vascular disease, 7% chronic liver disease, 5% ESRD, 5% COPD: 34% sepsis, 20% PNA

33% had been housebound or bedridden prior to admission44% survived initial effort, but…Only 31% with CPR effort survived >24 hours,

and…. 1/29 malignancy; 1/39 sepsis survived effort

Only 5% survived to discharge. 6 patients survived to hospital D/C (5% patients)

4/6 died in one year; 2 had severe disabilities and were alive at 1 year

Patients with chronic medical conditions undergoing CPR even in an ICU setting seldom survive to discharge…FJ Landry et al. Arch Intern Med 1992

Problems that arise in DNR discussions

Expecting patients to make decisions without adequate information (i.e. un-informed consent) Diagnosis Treatment options Prognosis

CPR discussions MUST be framed in terms of the overall goals of care and care plan, not in isolation

Weigh benefit/burden of each treatment option Can we do it? Should we do it?

Communication

Common phrases: “What would you like us to do if your heart stops?” “Do you want us to restart your heart if it stops?” “Do you want us to do everything?” “You don’t want us to break your ribs, and shove a

tube down your throat, and hook you to a breathing machine, do you?”

Barriers to patients accepting DNR

DNR only refers to this medical interventionMany patients and families fear that

DNR=“No Care”Unfortunately, medical teams often reinforce

this fear: We can’t take him to the ICU if he’s DNR He can’t get antibiotics if he’s DNR We think the best thing is to “withdraw care”

Steps for Discussion of CPR

Quiet setting; clarify goals for the meetingDetermine decisionality- make sure right people

are at meeting (team/decision maker)Clarify in your mind beforehand what is best

medical careWho is this person? “Tell me about your Dad. I

have all the medical information, but want to know more about him as a person. Can you tell me a little about him, and how things were going before he came into the hospital?”

Steps for Discussion of CPR

Ask patient/family what they know about medical condition- make no assumptions!

Present medical information; clarify misunderstandings

“Have you ever thought about what your wishes would be if you were ever in this situation?” or “ Has your father ever talked about what would be most important to him if he was ever in this situation?”

Helpful Communication Phrases

Make recommendation in terms of overall plan of care “Given that your cancer is growing and not responding to

chemotherapy, I think the best plan would be that we don’t use any more chemotherapy.”

“Your father is very sick. His heart, liver and kidneys are failing, despite our best medical efforts. He is dying.”

Judge whether the time is right to talk about CPR, or whether this would best be left to another discussion

These discussions are often a process….

Helpful Communication Phrases if Team Believes DNR is Not Appropriate

I want to talk about something that’s hard to discuss.

When someone’s heart and breathing stop, in other words when they die, we have a lot of things we can do to attempt to try and reverse this. This is called cardiopulmonary resuscitation, or CPR.

In patients who are very sick as you are, CPR has a low likelihood of working. In other words, patients rarely survive the CPR effort, and if they do, it’s extremely rare to make it out of the hospital.

Helpful Communication Phrases

CPR may just prolong the dying process, cause suffering and not bridge you to getting better, because it doesn’t fix the cancer (or whatever underlying process is present).

I would recommend that we protect you from CPR, which will only harm you and not offer benefit, and not do this when that time comes. This is what’s called “Do Not Resuscitate.”

Helpful Communication Phrases

Instead, I would recommend that we make sure you are comfortable, as pain free as possible, and well cared for as you are dying.

What are your thoughts about this?

Communication

Remember it often takes several discussions; people are processing tough information; give people time (if possible) and space

Respond to affect with affect I can see this is hard for you to hear (reflect on emotion in

the room). Silence: Can you tell me what your thoughts are? Have you

thought about this before? Allow silence; let patient determine tempo of discussion

To patient, this is an out-of-control situation. Try and give back as much control as possible

Communication

If you take something “off the table”, put something back on: Symptom control Family support Hospice care Other

Reassure non-abandonment“Even though we can’t fix the illness, there is

a lot we can do to help you and your family in this time. I want to hear what is most important to you and your family”

Does the order make sense?

Don’t let the sun set on a code status order that makes no sense Only cardioversion (in a patient who will die a

respiratory death) Only one shock, then stop Only for 5 minutes, then stop Chest compressions without cardioversion “He wants intubation, but he doesn’t want to be on a

ventilator…”

Summary

EOL discussions can benefit patients and families in real ways; do not cause harm May take a series of discussions…

EOL counseling should optimally start before a crisis

EOL discussions can help ensure patient autonomy, not take it away

Communication skills training is needed to help clinicians Major education focus of Palliative Medicine team:

medicine residents; oncology, geriatric and pain fellows. Better communication skills=less anxiety for HCP’s?

References

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References

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10. Wright AA et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA 2009;8(300):1665-1673.

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References

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References

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Thank you! Questions?