What you need to know about Palliative Care Jill R. Nelson, MSN, ANP-BC, ACHPNPalliative Care Consult ServiceVanderbilt University Medical CenterSeptember 9, 2013

Objectives

• List indications for palliative care• Describe common barriers to

palliative care initiation• List possible resources available for

those who are facing end of life

Palliative Care Definition• World Health Organization Definition: – “An approach that improves the quality of life

of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual needs”

– Multidisciplinary approach that focuses on the whole patient and family

– Note that the “unit of care” is more than the patient- to include family/friends, caregivers

A Palliative Care TrajectoryA Palliative Care Trajectory

Curative, Aggressive

Therapies/Trials

Palliative Care

Modalities

E n d of

L i f e

Care

One Year Bereavement

Care to Survivors

Example of a Bereavement Theoretical Model:

“Continuing Bonds”

May represent decades

Potential

Cure

Dia

gnos

tic P

hase

s

Diagnosis of a Potentially Life-Limiting Illness, Condition

To Include: Remission(s) Worried Wellness Cautiously Cured (Anxious) Survivorship Chronically well/ill

Hospice Care

(Where Appropriate)

(Benefit, 1983)

Death EventActive Dying

(24-72 hrs)

Who needs palliative care?

Indications for Consultation:• Working definition of palliative care:

Patients who are facing a potentially life-threatening illness. We assist with

1) pain and symptom management 2) hospice information and placement 3) goals of care* 4) patient and family support 5) advance care planning

*Goals of Palliative Care• Alleviate the suffering of the patient and

family by focusing on comprehensive care• Enhancing patient’s quality of life• Assisting patients and families through

the transition from wellness -->sickness --> dying --> bereavement

• Help patients/families navigate their search for meaning/ hope

• Assist patients in developing and achieving goals --allowing patients to die on their own terms--

World Health Organization 2013

Why is Hospital Based Palliative Care important?

• 53% of Americans die in hospitals each year 1

• 33.5% of Medicare beneficiaries died at home in 2009, although 70% of Americans say that they would prefer to die at home 2

• Typically more deaths occur in the ICU than anywhere else in the hospital 1

• Many patients benefit from palliative care, complementing their curative or life-prolonging treatments in the hospital

• Palliative care programs aim to provide very ill patients access to pain and symptom management, coordination among their health care team, and help with transition between care settings including hospice, home care, or nursing home placement

1 Center to Advance Palliative Care (CAPC), 2009

2 Change in End-of-Life Care for Medicare Beneficiaries Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009, Teno, JM, et all, JAMA. 2013;309(5):470-477

Hospitals are where the most money is being spent

• 29.2% of Medicare beneficiaries spent last 30 days of life in the ICU 1

• Nearly 20% of patients who leave the hospital today will be readmitted within the next month. More than 3/4th are potentially preventable. 2

• The cost of readmission to Medicare is $17.4 billion. 2

• Medicare is considering site of death as a quality measure for end-of-life care, on the theory that dying at home may be less stressful than dying in an institution.

• Enormous resources are expended on the seriously ill, putting the hospitals that treat them at financial risk if they cannot find a way to provide care that is both high quality and fiscally responsible.

1 Change in End-of-Life Care for Medicare Beneficiaries Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009, Teno, JM, et all, JAMA. 2013;309(5):470-477 2 Centers for Medicare and Medicaid Services

Americans’ Current Health Care Expenditures Are Concentrated in the

Final Part of the Life Span

Hospice Care• Based on Medicare Hospice Benefit• Signed statement by 2 MDs -qualifying pt is terminally ill and has six

months or less to live if the illness runs its normal course

• Do not have to be a DNR• Treatments are intended for palliation, not

for cure • Assists pt/family to live each day as fully as

possible for the remaining time together

Hospice Facts• In 2011, NHPCO estimates that

approximately 44.6% of all deaths in the United States were under the care of a hospice program.

• In 2011, approximately 35.7% of hospice patients died or were discharged within seven days of admission.

• Most patients referred to hospice programs survive no more than 3-4 weeks.

• Of the 1 million patients enrolled in hospice, more than 66.5% died at home.

• www.NHPCO.org Facts and Figures on Hospice Care Facts and Figures on Hospice Care

Hospice by Diagnosis2011

Cancer 37.7% Non-Cancer Diagnoses (62.3%) » Debility Unspecified 13.9% » Dementia 12.5% » Heart Disease 11.4% » Lung Disease 8.5% » Other 4.8% » Stroke or Coma 4.1% » Kidney Disease (ESRD) 2.7% » Liver Disease 2.1% » Non-ALS Motor Neuron 1.6% » Amyotrophic Lateral Sclerosis (ALS) 0.4%» HIV/AIDS 0.2%

www.nhpco.org

What does Hospice cover?• Cost of all medications, related to terminal illness• Durable medical equipment• Physician services• Visiting nurse services• Home attendants• Ambulance/Transportation• Short term inpatient stays for management of

acute conditions/symptoms• Respite care limited to 5 days maximum• Bereavement support• Use of a multidisciplinary team

So why do so few use the hospice benefit?

• Cultural denial regarding death on the part of patients and health care

• Lack of an awareness of the Medicare Hospice Benefit

• Patients’ and families hesitation to transition from “curative care to palliative care”

• Physicians apprehension about accurately predicting prognosis

How Accurate Are We?

“Give it to me straight. How much longer do I have left?”

Estimating prognosis

U. Chicago Medical Center Study: extent and determinants of error in prognostication.

Study participants:–343 physicians–468 terminally ill patients

Extent and determinants of error in doctors' prognoses in terminally ill prospective cohort study. .Christakis NA, Lamont EB.BMJ. 2000 Feb 19;320(7233):469-473.patients:

Conclusions–Median survival for patients 24 days

– 20% predictions were accurate (within 33% estimated survival time)

– 63% predictions were overly optimistic

– 17% predictions were overly pessimistic

Extent and determinants of error in doctors' prognoses in terminally ill prospective cohort study. .Christakis NA, Lamont EB.BMJ. 2000 Feb 19;320(7233):469-473.patients:

Implications

• Most all physicians regardless of specialty overestimate life expectancy

• The better a physician knows the patient, the more likely he/she will err in determining prognosis

• Experienced physicians are more likely to make accurate predictions

So back to the question....“How much longer do I have left?”

• Many patients and families understand this easy rule:

-if a patient is making “changes” month by month, they generally have months to live

-if a patient is making “changes” week by week (day by day, hour by hour), they generally have weeks (days, hours) to live

Real World Application in BICU

Goals Of Care Consult

Mr. C• 80 yo male, admitted with 40% total surface

area burns to bilat lower extremities• Intubated, on pressors, milrinone• Hx of HTN, asbestos exposure• per my admission note: “very active,

independent and stubborn. Works outside everyday, all day. Mows the lawn, chops wood, etc. Is rarely sick and has never been "down" for any length of time”.

• Called in on HD 3 for “goals of care, advance care planning, family support” as patient is critically ill

How to conduct a family meeting:

• Decide who the “key players” will be in the meeting- patient, family, caregivers, clinicians, consultants

• Pre-meet if necessary • Meet in a quiet and comfortable place

Family meeting continued…• Make introductions, explain everyone’s

role• Explain purpose of the meeting (set rules,

if needed)• Ask patient or family what their

understanding is of pt’s illness• Fill in the gaps in pt/family knowledge• Inquire about pt’s goals, wishes, values,

quality of life• Combine pt’s goals with what is medically

appropriate• Summarize, answer questions

Mr. C (cont)• Met with family and discussed role of palliative

care. Plans are to begin aggressive treatment of burns (excision and grafting of skin) the next day. Family in agreement with plan of care.

• Discussed patient’s ideal quality of life with family: -would not want to be kept in a "permanently unconscious condition." -would be content living with "permanent

confusion, dependent in all ADLs, and end-stage illness“ -would be content living in nursing home -patient has stated that he does not want to be a

“burden”

Mr. C (cont)• underwent several surgical procedures• weaned off vent • weaned off pressors• trached (due to need for re-intubations)• moved to step-down unit• participated in physical therapy- walked in

halls• daughter remained with patient, assessed

patient and spent time with daughter each day

Mr. C (cont)• HD 57: decompensated, hypotensive,

concern for bacteremia• transferred back to ICU, placed on vent,

pressors • HD 58: had family meeting, explained

seriousness of pt’s condition• made patient DNR based on medical

futility, family in agreement• Plan to continue aggressive treatment of

infections

To code or not to code? • In the largest and most comprehensive study of in-hospital

CPR outcomes, survival 20 minutes after CPR was 44%. 1

• However, only 17% of all CPR patients survived until discharge.

• In a meta-analysis of CPR outcomes, depending on the rigor of CPR, immediate survival was 41-44% and survival to discharge was 13-15%.

• Outcomes for cancer patients is worse. In a recent meta-analysis, only 6.7% of cancer patients survived CPR to discharge. 2

• Outcomes are also poor for renal patients. In 3 studies of renal patients and CPR outcomes, survival to discharge was seen in 14% of patients. 3

• Roughly 15% or 1 in 6 patients, who undergo CPR in the hospital may survive to discharge.

1 Peberdy MA, Kaye W, Ornato JP, et al. Cardiopulmonary resuscitation of adults in the hospital: A report of 14,720 cardiac arrests from the National Registry of Cardiopulmonary Resuscitation. Resuscitation. 2003: 58 297-308. 2 Reisfield GM, et al. Survival in cancer patients undergoing in-hospital cardiopulmonary resuscitation: a meta-analysis. Resuscitation. 2006; 71: 152-160.

3 Hijazi, F, Holley, JL. Cardiopulmonary resuscitation and dialysis: outcomes and patients’ views. Seminars in Dialysis. 2003; 16(1): 51-5.

Code status discussions• Unfortunately, code discussions usually take place

when patients are seriously ill. This is a stressful time for both patient and family, often not the most ideal time to have end of life discussions.

• There are times when providers feel that CPR would be medically futile. This means that CPR cannot be expected to either restore cardiopulmonary function or to achieve the expressed goals of the patient. Providers are not legally or ethically obligated to participate in a futile medical treatment. Therefore, some patients are made DNR/DNI based on medically futility. This is also true in discontinuing or not offering medical treatments (ie chemo, hemodialysis).

Medical Futility When it is determined that care is medically

futileIt is the physician’s responsibility to

determine plan of carePhysicians should remove burden of

decision from familyMany families are unable to make decisionsPhysicians are not obligated to offer all

treatments, only those that are medically indicated1

1 Luce, John. Physicians do not have a responsibility to provide futile or unreasonable care if a patient or family insists. Critical Care Medicine.. 1995;23:760-66.

Back to Mr. C• HD 66: making improvements, off pressors, on

trach collar, stating he does not want to “give up”• HD 71: Creatinine rising, requiring more time on

the vent, held family meeting to discuss realistic goals, not recommending initiating dialysis, family to discuss

• HD 73: Creat now 4, oliguric, unresponsive, on vent, family considering dialysis

• Met with family, discussed that “everything” has been done. Family in agreement to focus on comfort

• Patient dies comfortably with family at bedside early on the morning of HD 74

Real World Applicationin CCU

Goals Of Care Consult

Mr. F

• 68 year old male with chronic CHF, chronic renal failure admitted with fluid overload–Noted to have worsening renal function– Started on CVVHD–Milrinone initiated

Mr. F • Lives in rural part of Tennessee• Limited resources locally• He cannot get ultrafiltration locally• Wife (who is a LPN) has been pushing

120mg of lasix IV at home bid

• Palliative Care consulted to assist with “goals of care”

Introducing the elephant in the room

End of Life Discussions

• What does the patient/family know?• What does the patient want to know?• Who are the key decision makers?

Patient’s support system?• What are the present concerns?

Future concerns?

Common Patient Concerns

• Physical Symptoms (provider)

– Pain– Fatigue – Insomnia

• Emotional Symptoms (social worker)

–Worries about welfare of family– Dependence on others

Common Patient Concerns (cont)

• Psychological Concerns (social worker)

–Making peace with ones own mortality– Completing life tasks

• Spiritual Concerns (chaplain)

– Faith and religion

Common Family Concerns

• Physical:–“If she would just eat more”

• Psychological:–“Will my wife suffer?”

More Family Concerns

• Emotional:–“We need to make plans, but will

discussing these details depress her?”–“I get that she is dying, but how do I

talk to her about it?” …..or…–She has gotten through rougher

times than this one, she will get through this one too

Discussions surrounding death

• Patients are generally relieved to be able to openly communicate their concerns

• Families want assistance in opening up a dialogue

• Most patients/families appreciate honesty

Back to Mr. F• Dialysis catheter placed• Patient discharged on Milrinone but

was readmitted within a week with fluid overload

• Discharged again & gains about 20 pounds over holidays

Mr. F• Readmitted with worsening fluid overload• Team feels that it is not useful to continue

dialysis• Patient understands he is dying but not

ready to transition to comfort• Information about hospice given during

last admission• Unfortunately, local Hospice can not

provide Milrinone

Mr. F

• Palliative Care re-consulted, pt back in CCU

• Explore patient/wife’s perception of patient’s condition.

Mr. F

• Patient is confused-lacks capacity to make decisions

• Wife does not think he is worse• Cardiologists feel he is worse

• What do you do????

Changing goals

• Shifting to a different goal requires change:– Acute decompensation– Physician setting limits

But back to Mr. F…

• Primary cardiologist informs patient and wife that hemodialysis is not helping and they will not continue it.

• Also discusses that Milrinone is not helpful at this time, pt’s death is unavoidable

• Patient is discharged home with hospice• He dies peacefully at home 2 weeks later

Resources for Palliative Care and Hospice

www.capc.org www.nhpco.org www.eperc.mcw.edu www.hpna.org www.aahpm.org www.getpalliativecare.org

Thank you for your attention!

Please feel free to contact me with any questions:

Jill Nelsonjill.nelson@vanderbilt.edu