Ed Martin MD MPH

Home and Hospice Care of RI

JAMA 1995

Half of physicians did not know pt preferences re CPR

Half of patients who were conscious were reported to have moderate or severe pain at least half the time

Half of DNR orders written within 48 hrs of death

More than a third of pts who died spent > 10 days in ICU

Slide 3

The majority of deaths occur in elderly adults

Terminally ill patients spend most of final

months at home, but most deaths occur in

the hospital or nursing home

Location of death varies regionally:

Portland: 35% in hospitals

New York City: > 80% in hospitals

Slide 4

Typical deaths are slow, associated with chronic disease, and have multiple co-existing problems

Typical deaths are marked by dependency & care needs

Quality of life during dying process is often poor because of

--inadequate treatment of distress; fragmented care; strains on family, support system

Difficult decisions about use of life-prolonging treatments are common

Slide 5

Seeks to prevent, relieve, or reduce the symptoms of disease or disorder without effecting cure

Attends closely to emotional, spiritual, and practical needs & goals of patient, family

Usually for those at imminent risk of dying

Also appropriate for those who are extremely ill, living with serious complications, or with advanced chronic disease

Slide 6

A site of care for dying patients

An organization that provides such care

An approach to the care of dying patients

A Medicare benefit

Slide 7

For beneficiaries with an expected prognosis of

6 months

Includes: physician services, nursing care,

medical equipment and supplies, medications,

short-term inpatient care for symptom

management & family respite, PT or OT,

bereavement services, home-health aide

services

Slide 8

Limited access

Lack of family support

Late referral

Difficulties in prognosis

Interdisciplinary approach

Nurse Practitioner/MD

Requires a physician order

Patients with life-threatening illness

Uncontrolled symptoms

Assistance with decision making

Post-op pain team

Addiction medicine team

hospice

Pain

Nausea

Vomiting

Dyspnea

Agitation

Fatigue

Any symptom interfering with function/QOL

Cancer

CHF/Refractory Cardiac Disease

COPD

Cirrhosis

Dementia

ESRD

“Complication cascade”

“Failure to Thrive”

Recurrent hospitalization Frequent/prolonged ICU stays Disagreements in plan of care Preexisting functional impairment in a person

with dementia Advanced stage malignancy Cardiac arrest Prolonged dysfunction of multiple organs

Decision to forego life sustaining treatments

Presenting alternative approaches

Transition to a less aggressive approach

“I’m not ready to throw in the towel”

You can keep the towel!

Clarify/Confirm understanding of prognosis

Given prognosis, identify goals of care

Given goals of care, develop plan of care/treatment

30 day window

Dying patients going for “rehab”

Dying cancer patients going home to get “build up your strength to get more chemo”

Case management/key role in identifying discharges that are likely to be unsuccessful

Role of palliative care in the ED

“There is something we can do”

“Do not hospitalize”

Temel JS et al. NEJM. 2010;363;733-42

Randomized, controlled, non-blinded

Metastatic non-small cell cancer

Enrolled 8 weks after dx

Intervention group met with member of palliative care team within three weeks and then at least monthly until death

Additional visits if needed

Assessed physical and psychosocial symptoms

Helped establish goals of care

Assisted with decision making regarding treatment

Helped coordinate care

Pts in standard care only saw palliative care if requested and did not cross over

Pts already receiving palliative care at start were not eligible for study

Quality of life, mood assessment tools were used

Multivariate linear regression analysis

151 enrolled

10 pts 14%,in standard care group had palliative care visits for symptom control

Palliative care pts had:

higher quality of life scores

Less depressive symptoms

70% died during study

Palliative care group:

Less likely to get aggressive end-of-life care (33% vs 54%)

More likely to have resuscitation preferences documented (53% vs 28%)

Longer time on hospice (11 days vs 4 days)

Longer survival (11.6 vs 8.9 months)

Less chemotherapy

May need to address misunderstandings about the limits of medical care

The Palliative Medicine Procedure

Isn’t that just basic medical care ?

The procedure that has no reimbursement

Health Care Reform proposed reimbursement

“You shouldn’t have counseling at the end of life…”

Senator Charles Grassley

Aug 12 2009

“will have to stand in front of Obama’s ‘death panel’ so his bureaucrats can decide, based on a subjective judgement of their ‘level of productivity in society’ whether they are worthy of health care”

Gov. Palin

Misunderstandings re limits of medical care

Misunderstandings re prognosis: survival and function

Misconceptions about hospice

Media

Family and Friends

Myth and Legend

Understanding of probability

Diem SJ, Lantos JD, Tulsky JA, NEJM 1991;334:1578-82

Patients don’t understand CPR

Overestimate success of CPR

Murphy DJ, et al. NEJM 1994;330:545-49

41% to 21% after learning probability of survival

Complex discussions may be difficult to reduce to percentages

Nuances such as level of function if illness is survived

Casarett D et al. BMJ. 2005;331:1537-9

Comas lasted median of 13 days

89 % full recovery

8% died

3% vegetative state

Those that recovered, 86% had no deficits the day they regained conciousness

May not be understood to be a terminal illness

2/3 of pts in a heart failure clinic believed heart disease would not shorten their survival

Discordance Between Patient-Predicted and Model-Predicted Life Expectancy Among Ambulatory Patients With Heart Failure

JAMA. 2008;299(21):2533-2542

Do medications used to control symptoms hasten death?

Does critical care prolong survival of the terminally ill?

Will the patient who chooses hospice be trading quantity of life for quality of life?

Connor SR et al.

Journal of Pain and Symptom Management

2007;33:238-246

Retrospective cohort study

Six diseases identified in 1999 claim data

One inpatient claim or 2 outpatient claims

Died within 3 years

Pancreatic Cancer

Colon Cancer

Lung Cancer

Breast Cancer

Prostate Cancer

CHF

If multiple, assigned with above ranking

Patients who died within 15 days of indicative date

Patients with claims for same illness in 1998

Breast Cancer: change in chemo within 6 months of prior chemo claim

Colon Cancer:

If no resection, start of chemo

Chemo start within 3 months of resection

First intestinal stent

Lung Cancer

Biopsy followed by chemo (no resection)

Change in chemo within 6 months of prior chemo claim

Pancreatic Cancer: date of dx

Prostate Cancer: stontium89 claim

CHF: vented without CABG or MI

Inpt claim for CHF within 3 months

Dependent variable: survival

Independent variables: diagnosis, age, sex, race, and use of hospice

CHF: hospice 402, NH 321 p.054

Lung CA: hospice 279, NH 240 p<.0001

Pancreatic CA: hospice 210, NH 189 p=.01

Colon CA: hospice 414, NH 381 p=.079

Breast CA: hospice 422, NH 410 p=.61

Prostate CA:hospice 514, NH 510 p=.82

Positive between hospice length of stay and survival

Largest difference noted for CHF pts but fewer CHF pts chose hospice

Do hospice patients avoid risks of overtreatment?

Does good palliative care prolong survival?

What role does the emotional and spiritual support play?

Social supports: are patients less of a burden ?

Hospice may prolong survival

Does not appear to hasten death

Wright, AA et al, JAMA,2008;300:1665-73

Prospective,longitudinal,multisite cohort

Terminally ill CA pts and caregivers

917 eligible, 638 enrolled, 332 died and studied (more debilitated)

Baseline Interview: “ Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying?” (yes/no)

Patients reviewed weekly with clinic staff

Record reviewed within 3 weeks of death and care documented, ie ICU, chemo, feeding tube

Postmortem interview with formal/informal caregivers re final week of life

Bereaved caregiver interview at 6.5 months

123/332 (37%)reported an EOL discussion with MD

Differences by site; 61.5%-16.2%

Lower performance status, higher symptom burden, shorter survival times more likely to have discussion

No association with feeling “sad, depressed, terrified, worried”

No association with DSM IV dx

Accept illness was terminal 52.9% vs 28.7%

P< .001

Prefer rx focused on relief of pain/discomfort

85.4% vs 70% P< .001

Have a DNR order 63% vs 28.5% P< .001

Hospice> 1 week 65.6% vs 44.5% P=.03

Decreased with more aggressive therapies

No aggressive care 6.4 (0-10 scale,10 best)

3 or more therapies 4.6 P=.01

Quality of life increased with hospice LOS

Less than 1 wk no difference

Greater than 2 months 6.9 P=.01

Major Depressive Disorder; OR 3.37, (95% CI 1.12-10.13)

Also increase in; experiencing regret, feeling unprepared for patient’s death,

Decrease in quality of life, reported health, role limitations

Correlation between pt QOL and caregiver QOL at follow up.

Higher pt QOL assoc with higher caregiver; QOL, reported health, physical functioning, mental health

Higher pt QOL assoc with caregivers being better prepared for death, and experiencing less regret

Pts may not recall EOL discussion

Pts may not have understood it was an EOL discussion

May need to use the “D” word when we want to discuss death and dying

Pts who have and recall discussion have no increased mental health issues and seemed to prefer more symptom focused care with an increase in QOL for pt and caregiver.

It seems to be worth the time and effort

Can it be improved?

“Words matter”

Pantilat SZ. JAMA.2009;301:1279-81

“There is nothing more to do”

“Would you like us to do everything possible”

“Stop the machines”

“Withdrawal of Care”

“to cure the illness”

Not true

Feels like abandonment

Replace with “ I wish there were something we could do to cure your illness.” “Let’s focus on what we can do to help you.”

“to help you achieve your goal”, “that would be helpful given the circumstances”

What is everything?

DNR/DNAR

“How were you hoping we could help”

“What would your father have wanted”

Focuses on what will not be done

“To respect his wishes we will stop the breathing machine and make his breathing comfortable”

“If your heart stops we will let you die peacefully”

Care is never withdrawn although certain interventions may be.

“Withdrawal of mechanical ventilation and vasopressors and institution of comfort measures”

Quill,TE et al. Ann Intern Med 2009;151:345-9

Everything that might provide maximum relief of suffering, even if it might unintentionally shorten life

Everything that has any possible potential to prolong life even a small amount, regardless of its effect on the patient’s suffering

Abandonment

Physician may be less likely to provide care unrelated to resuscitation

“What worries you the most”

“What are you hoping for”

“What is your understanding of your condition/prognosis.”

“What are your most important goals”

“Tell me more about what you mean by ‘everything’”

“Does your religion provide any guidance in these matters”

“How is your family handling this.”

Physician may suggest a plan of care based on patient’s treatment philosophy and goals of care given the medical condition and prognosis.

Consider a time limited trial when there is disagreement regarding plan.

When patient wants full care with no limits

Ongoing negotiation can feel like badgering

May still exercise clinical judgment ie stop CPR after one cycle. NOT a slow code.

Support the care team.

El-Jawahri A et al. J Clin Oncol.2009;28:305-310

50 participants 27 verbal/23 video

Verbal Video

Life-prolonging 25.9% none

Basic care 51.9% 4.4%

Comfort Care 22.2% 91.3%

Uncertain none 4.4%

82.6% were comfortable watching video

Video group improved more on test of knowledge: questions about CPR survival, comfort care

“Most cancer patients that get CPR in the hospital survive and get to leave the hospital.” True or False

Increase in concurrence of surrogates with decision making

Increased knowledge

Decrease uncertainty

Increase preference for comfort measures at end of life

Taylor RM et al. J Support Oncol.2010;8:42-44

Otherwise healthy patient: not dying, arrest is cause of death, CPR treats cause

Dying patient: arrest is mechanism of death. CPR does not treat cause of death

“option” of resuscitation suggests it is an intervention that makes sense

DNR should be clearly recommended by physician for dying patient

Otherwise burden placed on family to refuse an intervention that makes no sense

White DB et al. Crit Care Med. 2010;38:743-50

Audio tapes reviewed

Physician roles categorized

7/63

Information provided on condition, prognosis, and treatment options

No information solicited on patient’s values

No recommendation provided on life support

23/63

Information provided on condition, prognosis, and treatment options

Actively guided surrogate through identification of patient’s values and applicability to decision

Refrained from providing a recomendation

32/63

Physician shared in deliberations and provided a recomendation

1/63

Physician took responsibility for and informed family of decision

20 times surrogate asked for a recommendation

10 times the physician refused

When discussing interventions that do not make clinical sense

CPR in a dying patient, feeding tube in advanced dementia

Provide recommendation

Patient/surrogate can opt out

Weeks JC et al. NEJM 2012;367:1616-25

Stage IV Lung or Colon CA who opted for chemo(4-7 months after dx)

“Chemotherapy not at all likely to cure cancer”

69% of lung and 81% of colon ca did not understand this

non whites/hispanics less likely to understand

Patients who rated physician communication favorable were less likely to understand

Educational level, functional status and patients role in decision making not associated

Informed consent

Are physicians who convey more optimism viewed as better communicators

Focus of discussion prognosis vs chemo

Honest communication may lead to lower ratings

Panagopoulou E. Journal of Clinical Oncology. 2008;26:1175-1177

Decreased anxiety

Decreased negative mood

Increased positive mood

Reduced sympathetic activity (heart rate)

Will often not wrap it all up in one meeting

Discussion may evolve

First PT/Family need to understand prognosis

Goals, values and decisions may change dramatically.

Meet patient and family where they are at