Introducing Patients and Families to Hospice: when and how to have the

conversation

Michelle Weckmann MS MD FAAHPM UIHC Fam Med Psych Program Director

Iowa City Hospice Physician michelle-weckmann@uiowa.edu

Disclosures:

• No relevant financial relationships to disclose

Objectives:

The learner will be able to:

• Recognize to importance of clarifying goals and prognosis during the hospice conversation

• Describe the ask-tell-ask method for giving hard news

• List one thing not to say when discussing hospice

Historical Perspective

• 16th century aphorism defining the role of a physician:

To cure sometimes

To relieve often

To comfort always

Historical Perspective

1900

1. Influenza and pneumonia

2. TB

3. Gastritis, doudentits, enteritis

4. Heart Disease

5. Cerebrovascular disease

6. Chronic nephritis

7. Accidents

8. Cancer

9. Infantile diseases

10. Diphtheria

Corr CA, Death In Modern Society. Oxford Textbook of Medicine 2nd ed., Doyle editor, Oxford University Press, 1998,pp. 33

Current Perspectives

• We are living longer (and sometimes healthier) lives

• Despite continued medical advances the mortality rate (in my practice) remains 100%

• Family practioners are uniquely suited to provide EOL education and care

New Perspective

To comfort sometimes

To relieve often

To cure always

New Perspective

Today

1. Heart disease

2. Cancer

3. Cerebrovascular disease

4. COPD/Asthma

5. Accidents/adverse effects

6. Pneumonia and influenza

7. Diabetes

8. HIV

9. Suicide

10. Chronic liver disease and cirrhosis

Corr CA, Death In Modern Society. Oxford Textbook of Medicine 2nd ed., Doyle editor, Oxford University Press, 1998,pp. 33

When is the right time? What you need to know about hospice and palliative care

Hospice vs Palliative Care

• All of hospice is palliative care but not all palliative care is hospice

The course of a life-limiting illness

Therapies to prolong life

Palliative Care

Hospice

Therapies to relieve suffering and/or

improve quality of life

Bereavement Care

6 months Death

Differences Between Hospice vs. Palliative Care

Hospice

• Prognosis of 6 months or less

• Focus only on comfort care

• Medicare hospice benefit

• Usually outpatient

Palliative Care

• Any time during illness

• May be combined with curative care

• Independent of payer

• Often acute inpatient

How Does Hospice Work?

• Team based care designed to support patients and families at the end of life wherever they may be located

• Medicare benefit pays a hospice a per diem rate of about 160$. From that the hospice provides everything related to the terminal prognosis

• Hospice care can vary– May have standing orders– May offer medical director visits or on call coverage

• Expectation is that the primary care MD (or ARNP) remain in control of the patient’s care

Medicare Hospice Benefit

• Eligibility criteria1. Physician certified prognosis of less than 6 months

assuming “the terminal illness runs its usual course”.

2. Treatment goals are palliative rather than curative.

3. A physician is willing to be the physician of record.

• Note!! Hospice agencies may not use DNR status as criteria for eligibility.

Other Criteria …

Individual hospice agencies may havetheir own additional criteria, such as …

1. No current or planned use of blood products, artificial hydration, TPN, or non-oral feeding

2. A primary caregiver is in place in the home setting most (if not all) of the time

3. Other (check with your local agency)

Medicare Hospice Benefit

• The Hospice Core Team

– Responsible for determining hospice eligibility and the Plan of Care together with the patient and the patient’s primary physician.

• Hospice physician medical director• Skilled nurse• Social worker• Chaplain• Volunteer program coordinator• Bereavement program coordinator

The Primary Physician

• The patient’s primary physician remains involved in hospice care;

– Consulted on all medical issues

– Consulted on re-certification

– Can continue to see the patient—in clinic or at home

• Can bill for services through Medicare Part B.

In Addition to the Core Team Hospice Must Provide…

• Home health aid service for a limited period of time each week (not full time)– bathing, dressing, feeding

• Psychological counseling– patient, family, and

community

• Preparation for death– advanced directives, wills,

funeral planning

• Volunteers

• Inpatient care – for acute symptom

management or impending death

• Respite care– up to 5 days at a time

• Note: hospice does provide 24/7 on call services by a trained hospice nurse but does not provide 24 hour custodial care.

Types of Hospice Care

• Routine Home Care

• Respite Care

• GIP

• Continuous Home Care

Hospice Fact or Myth

• Only physicians can refer to hospice.• The primary physician must give over control of the patient to hospice.• Only cancer patients are appropriate for hospice.• Nursing home patients are not eligible for hospice.• Patients who live more than six months will be discharged from hospice.• Hospice patients can not be admitted to the hospital.• The patient must be DNR.*• The patient must have a primary caregiver.*• Hospice care precludes a patient from being able to receive

chemotherapy, blood transfusions, or radiation.*• Hospice care ends when a patient dies.

*Individual hospice programs may have different requirements for admission and offer different services.

Hospice Referral Basics:

• Rule of thumb: Would you be surprised if the patient died in the next 6 months?

• General predictors (applicable to all diagnoses):– Underlying chronic life-limiting disease and – Weight loss and– Progressive loss of function (ADL’s) and/or– Increasing frequency of hospitalization with no

improvement in function

Advance Care Planning

• Communication between the patient, the family/healthcare proxy, and staff for the purpose of:

– Prospectively identifying a surrogate decision maker

– Clarifying treatment preferences

– Developing individualized goals of care near the end of life

Types of Advance Directives

Instructive Proxy

Living Will Durable power of attorney for healthcare• Only applies if the patient does not

have decision making capacity• Can be revoked (verbally) at any time

Do Not Resuscitate Orders Common law directive in Iowa:• Spouse• Adult child (or majority of children)• Parent(s)• Adult sibling

Iowa Physician Orders for Scope of Treatment (IPOST)

Personal letter describing EOL wishes• Honoring Your Wishes• 5 Wishes

Verbal Statements

Organ donor cards

IPOST

Make it Part of Routine Care

• Normalize the conversation

• Talk about advance directives early and often

• Consider briefly discussing at all annual PE

– Use a handout/brochure

– Create a .dot phrase

Useful websites

• The conversation project

– http://theconversationproject.org/

• PREPARE

– https://www.prepareforyourcare.org/

• Death and Dying Dinner Parties

– http://deathoverdinner.org/

– http://deathcafe.com/

Prognostication

• Provides framework to make informed decisions about care

• We tend to be overly optimistic– Doctors over-estimate by a factor of 5.3– The longer we know a patient the less likely we are to

be accurate

• Downfalls to being inaccurate– Later hospice referrals– Patients request more futile care– EOL decision change based on perceptions of

prognosis

Fact Fact #30

Prognosis Discussion

• Don’t use specifics

– “days to weeks”

– “weeks to months”

– “months to years”

• https://eprognosis.ucsf.edu/communication/video-goals.php (video 2)

ePrognosis

Predicting Life Expectancy

• The Palliative Performance Scale (PPS)

– For patients showing functional decline

– Increased 6 mo mortality with score <50

Initiating the Hospice Conversation

• Set the stage

• Discuss prognosis

– Most patients are grateful for honest information

• Refocus from cure to other goals

• Use patient centered communication skills

• Focus on goals (ideally realistic)

Set the Stage

• Make time

• Make space (quiet, private, enough seats)

• Be present (remove distractions)

• Ask-Tell-Ask

– Discover patients goals

Always Ask Permission

• https://www.vitaltalk.org/topics/offer-prognostic-information/

Discuss Prognosis-ADAPTStep What you say

1. Ask what the patient knows, what they want to know

What have other doctors told you about what your prognosis, or the future?How much have you been thinking about the future?

2. Discover what info about the future would be useful for the pt

For some people prognosis is numbers or statistics about how long they will live.For other people, prognosis is about living to a particular date. What would be more helpful for you?

3. Anticipate ambivalence

Talking about the future can be a little scary.If you’re not sure, maybe you could tell me how you see the pros and cons of discussing this.If clinically deteriorating: From what I know of you, talking about this information might affect decisions you are thinking about.

4. Provide information in the form the patient wants

To provide using statistics:The worst case scenario is [25th percentile], and the best case scenario is [75th percentile].If I had 100 people with a similar situation, by [median survival], 50 would have died of cancer and 50 would still be alive with cancer.To provide without statistics:From my knowledge of your situation and how you cancer has been changing /responding, I think there is a good/50-50/slim chance that you will be able to be around [on that date/for that event].

5. Track emotion

I can see this is not what you were hoping for.I wish I had better news.I can only imagine how this information feels to you. I appreciate that you want to know what to expect.

Copyright VitalTalk 2018

Example of DNR Conversation

• https://eprognosis.ucsf.edu/communication/video-goals.php (video 4)

Initiating the Hospice Conversation

• “what if I told you there was a free program you were entitled to that would provide you with a whole team (nurses, aides, chaplains) who would check on you at home and help manage your [heart disease], in addition to paying for your medicine and other needed medical supplies? Do you believe a program like this exists? What I said we have this program and it is called hospice?”– Ann Broderick MD

Initiating the Hospice Conversation

• Ask what they know about hospice

• Ask about previous hospice experience

– Good? Bad?

• Address mis-information

• Discuss non-abandonment

– We are trained to “cure” disease and may project a subconscious sense of failure to the patient

Commonly Misconstrued Physician Phrases

Used in End-of-Life Discussions with Patients

Physician phrase Possible patient interpretation Alternative phrase

“There's nothing we can do for you” Abandonment: “My physician doesn't want to see me anymore”

“We can offer many options to control your symptoms and make you feel better”

“It's time to think about withdrawal of care”

Cessation of care: “My physician doesn't want to care for me anymore”

“Do you think that it is time to consider a different type of treatment that focuses on your symptoms? I'll be here with you no matter what you decide”

“Do you want us to do everything that we can to keep you alive (e.g., artificial life support)?”

Cessation of appropriate care: “If I don't have them do everything, I won't get the best medical care”

“If you become extremely ill, would you want to be put on artificial life support, or would you prefer a natural death?”

“You've failed the treatment (e.g., chemotherapy, radiation)”

Personal failure: “I've disappointed my physician”

“The cancer has not responded to the treatment as we had hoped. How are you doing?”

“I think you should consider hospice” Despair and hopelessness: “I'm going to die soon”

“I want to provide intense, coordinated care with a team of professionals who will treat your symptoms and help you stay comfortable”

Ngo-Metzger. AFP. 2008

Questions?

References

• “End-of-Life Care: Guidelines for Patient-Centered Communication.” Ngo-Metzger Q, August KJ, Srinivasan M, Liao S, Meyskens FL. AFP. 2008;77:167–174.

• “Discussing End –of-Life Care with Your Patients”. Old J. FPM. 2008 Mar:15(3):18-22.

• Palliative Care Network of Wisconsin Fast Facts (https://www.mypcnow.org/)– Searchable phone app

• AAHPM• NHPCO• Vital Talk (phone app)• ePrognosis