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Everyone Wants To Go To Heaven…. But Nobody Wants to Die






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Everyone Wants To Go To Heaven…. But Nobody Wants to Die. Jean Gordon RN, MSN, CHPN Director of Education, QA/PI Hospice of East Texas. Objectives. Identify evolving trends in end of life care, with a focus on palliative care . Differentiate between hospice and palliative care programs. .
Everyone Wants To Go To Heaven…. But Nobody Wants to Die

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Slide 1

Everyone Wants To Go To Heaven….But Nobody Wants to Die

Jean Gordon RN, MSN, CHPN

Director of Education, QA/PI

Hospice of East Texas

Slide 2

Objectives

  • Identify evolving trends in end of life care, with a focus on palliative care .

  • Differentiate between hospice and palliative care programs.

Slide 3

Dr. Atul Gawande – a surgeon and staff member of Brigham and Women’s Hospital and the Dana Farber Cancer Institute in Boston “Letting Go”, The New Yorker, August, 2, 2010

  • Our medical system is excellent at trying to stave off death with chemotherapy, intensive care, and surgery. But, ultimately, death comes, and no one is good at knowing when to stop.

  • “In the past few decades, medical science has created a new difficulty for mankind: how to die,

  • due to the seemingly unstoppable momentum of medical treatment.”

Slide 4

Do you want everything done?

  • What the patient/family hears

    • Resuscitation

    • Ventilator

    • Surgery, transplants….

    • Cure

    • Return to normal life

  • What the physician/nurse means

    • We’ll try CPR, if you insist.

Slide 5

Evolving Realities

  • Life expectancy has increased

  • Increased prevalence of chronic disease

  • Increased comorbidities and frailty with advancing age adding to complexity

  • Death is considered by many -- to be “optional”

Slide 6

  • 25% of all Medicare spending is for 5% of patients who are in their final year of life;

  • and most of that money goes for care in their last couple of months….

  • which is of little apparent benefit.Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 7

Finley, E. & Casarett, D. (2009). Making Difficult Discussions Easier: Using Prognosis to Facilitate Transitions to Hospice. CA Cancer J Clin

What Do Patients Want??

  • Realistic prognostic information

  • Straightforward communication

  • Time and ability to ask questions

  • Sensitivity, empathy, & “expertise”

  • Assurance of non-abandonment

  • Appropriate transition to palliative care

Slide 8

Challenges

  • Difficulty with patients and/or families accepting that effective treatment is no longer available

  • Or… that patient has fewer than 6 months to live.

  • Certain people have the skills to cope well and go gently into the night, while many never come to terms with the fact that they are dying.

  • Some understand that death is imminent but aren’t emotionally accepting of it and fight to stay alive at any cost.

    Casarett, D. & Quill, T. (2007). “I'm Not Ready for Hospice": Strategies for Timely and Effective Hospice Discussions. Annals of Internal Medicine. 146 (6).

Slide 9

“What should medicine do when it can’t save your life?”

  • “Modern medicine is good at staving off death with aggressive interventions -

  • and bad at knowing when to focus, instead,

  • on improving the days that terminal patients have left.”

    Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 10

  • “How can we build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.”

    Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 11

Restoring the Balance

Palliative Care

Life Prolonging Care

Slide 12

Trends in End of Life Care

Greater emphasis on ‘reasonable’ care through:

  • New legislation

  • ‘AND’ orders

  • Palliative care teams/services

Slide 13

  • The Palliative Care Information Act bill (S. 4498 Duane/ A. 7617 Gottfried), has passed both houses of the NY State legislature and is awaiting signature by New York’s Governor David Paterson. If signed, the bill “requires physicians to discuss all end of life options.”

    http://www.examiner.com/x-59793-NY-Healthy-Living-Examiner~y2010m7d30-NY-Governor-considers-law-to-prompt-discussions-about-end-of-life-decisions?cid=email-this-article

Slide 14

  • The health reform bill that passed April, 2010 included a Medicare pilot project to allow 12 communities across the country to offer both curative treatment and hospice services to terminal patients to evaluate whether physicians would refer earlier and patients would accept hospice earlier.

Slide 15

Supportive Versus Palliative Care: What's in a Name?

  • Palliative Care as a term was seen as more distressing to providers, patients, and families than Supportive Care and perceived as synonymous with hospice and with giving up hope.

  • Treatment implies that something active will be done and that there is still hope,

  • whereas care is viewed as less active and devoid of hope.

    Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer.

Slide 16

Supportive Versus Palliative Care: What's in a Name?

  • Many use the phrase "the patient has been taken off treatment" when chemotherapy has been discontinued,

  • despite the fact that opioids are being titrated, medications are given for symptom management, and family needs are being addressed.

  • This is the provision of supportive or palliative treatment.

    Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer.

Slide 17

Supportive Versus Palliative Care: What's in a Name?

  • When patients are given a choice between pursuing non-evidence based, unproven life-prolonging interventions (frequently called treatments), or

  • receiving only Palliative Care,

  • they might opt for treatment only because they view any treatment as preferable to care.

    Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer.

Slide 18

Supportive Versus Palliative Care: What's in a Name?

  • Physicians & patients are more responsive to“hospice treatment”rather than end of life care.

    Fadul N, Elsayem A, Palmer JL, et al. (2009). Supportive versus palliative care: what's in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer.

Slide 19

A.N.D. (Allow Natural Death)

  • “If your heart stops, we are going to let you die peacefully.”

  • “We will give you medicines to help make your breathing more comfortable.”

  • These phrases truthfully communicate the care that clinicians have and prevents the patient/caregiver from feeling that ‘care has been withdrawn’

Slide 20

  • A.N.D. orders vs D.N.R. orders

  • Perceptions can be everything -

    • Positive

    • Supportive

    • Non-abandonment

    • Empathy

Slide 21

Palliative Care

an approach to care that improves quality of life of patients and their families facing life-threatening illness, through prevention, assessment, and treatment of pain and other physical, psychological, and spiritual problems.

(WHO, 1982)

Slide 22

Palliative Care:

  • Supports the patient and family’s goals for the future, during whatever time they have remaining

  • as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death.

  • Prevents and relieves suffering and promotes the best possible quality of life

    American Academy of Hospice and Palliative Medicine

Slide 23

  • How do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?

  • Is someone with terminal cancer, dementia, or incurable congestive heart failure dying, exactly?

    Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 24

Prognosis Can Be Difficult to PredictLife Shortening Illness Actively Dying

Slide 25

Cure of disease

Avoidance of premature death

Maintenance or improvement in function

Prolong life

Relief of suffering

Quality of life

Staying in control

A good death

Support for families and loved ones

Potential Goals of Care

Slide 26

Palliative Care’s Place in the Course of Illness

Diagnosis

of Serious

Illness

Medicare

Hospice

Benefit

Life Prolonging Therapy

Palliative Care

DEATH

Slide 27

Palliative Care

  • Focuses on the patient and family preferences, not just on the patient’s disease process.

  • Seriously ill people often feel as though they are lost among many specialists focused on body organs.

Slide 28

  • > 5800 hospitals in the US – 2009

  • Over 1300 hospitals have palliative care programs.

  • Palliative Care Services reduce hospital cost and length of stay;

  • reduce utilization of critical care beds;

  • improve care of patients near end of life;

  • optimize symptom management.

Slide 29

What Is Hospice?

  • A program for patients who have a limited prognosis or life expectancy –

  • Usually, 6 months or less

  • Goals:

    • Relief of pain and other symptoms

    • Psycho-social support

  • Benefit covered by medicare, medicaid, and most insurance companies at no cost to the patient.

Slide 30

Hospice provides:

  • Regular visits by nurse, hospice aide, & social worker to allow family to care for patient at home

  • Volunteers, clergy – as desired

  • Medications to manage pain and symptoms related to the terminal diagnosis

  • Supplies, medical equipment, 24 hour RN and physician availability

Slide 31

Hospice does not =

  • morphine drip, or

  • giving up

Slide 32

Dr. Atul Gawande – surgeon and staff member of Brigham and Women’s Hospital and the Dana Farber Cancer Institute in Boston “Letting Go”, The New Yorker, August, 2, 2010

  • “Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain.”

Slide 33

Hospice

  • But studies suggest otherwise.

  • A study of 4,493 Medicare patients with either terminal cancer or congestive heart failure, found no difference in survival time between hospice and non-hospice patients with

  • breast cancer,

  • prostate cancer, and

  • colon cancer.

    Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 34

Hospice

  • Curiously, hospice care seemed to extend survival for some patients;

  • those with pancreatic cancer gained an average of three weeks,

  • those with lung cancer gained six weeks, &

  • those with congestive heart failure gained three months.

    Atul Gawande MD, The New Yorker, August, 2, 2010

Slide 35

  • Hospice care goes where the patient is – home, assisted living, nursing home, inpatient unit

  • 80% of hospice care takes place in the home

  • An RN case manager is assigned to each patient to coordinate care and follow the patient’s and family’s goals for end of life.

Slide 36

Hospice Care Provides:

  • Patient & family control over decisions about care

  • Anticipation of disease progression and preparation for patient decline

  • Short term inpatient care for crises or respite

  • Option for patient to die at home & be pronounced by an RN (without calling 911)

  • Grief counseling for 1 year following patient’s death

Slide 37

Conditions for Hospice Eligibility Under Medicare

  • Order for certification of terminal illness and admission to hospice by patient’s attending physician and Hospice Medical Director

  • Patient chooses hospice benefits rather than standard Medicare*

  • Patient chooses palliation as goal, rather than cure

  • Under Medicare, DNR status cannotbe used as a requirement for admission

    *Patient may choose to revoke Hospice Care and revert to Cure-Oriented Care at any time

Slide 38

Liver disease

Renal disease

ALS disease (Amyotrophic Lateral Sclerosis; Lou Gehrig's Disease )

HIV disease

Heart disease

Alzheimers & dementia

Pulmonary disease

Stroke and/or coma

Adult failure to thrive

Neurologic disorders

Diseases with Coverage Guidelinesindications of terminality

Medicare requires recertification every 60 days to

assess and document continued appropriateness

for the hospice benefit.

Slide 39

Benefits of Hospice Care

  • Interdisciplinary, collaborative

  • Cost-effective

  • Extremely high patient and family satisfaction

  • Improves quality of life

  • Patients can revoke to pursue treatment or testing and then readmit, if desired

Slide 40

Hospice Services

Patient population

Patients with life-limiting illness; 6 months or less

Sites of care

Home, NF, Assisted living, hospital, hospice inpatient unit

Hospital-Based Palliative Care Services

Patients at any stage of advanced or life-limiting illness;

May continue with curative treatments

Hospital;

outpatient or NF services varies by program

- no home care services

Comparing Hospice vs. Palliative Care

Slide 41

Hospice Services

Pain & symptom management, psychosocial, volunteer, spiritual, bereavement support

Coordinated care delivered by IDT (physician, nurse, SW, clergy, aide, volunteer, pharmacist, therapist)

Hospital-Based Palliative Care Service

Pain & symptom management

Services vary by program from a single MD to NP, SW, nurse, clergy, psychologist, counselors, therapy

Comparing Hospice vs. Palliative Care

Slide 42

Hospice Services

Program reimbursed by medicare, medicaid, insurance

Medications, supplies, durable medical equipment – provided at no cost to patient

Family bereavement support for 1 year after death

Palliative Care Services

Physician consult is paid

All other services are non-reimbursed

Comparing Hospice vs. Palliative Care

Slide 43

Texas Palliative Care (TPC)

  • The only palliative care service in east Texas

  • Service began October, 2008 and is offered at Mother Frances Hospital and ETMC in Tyler

  • Dr. Laura Ferguson, Dr. Thomas Beets, Dr. Keith Frazier, Dr. Craig Gunter – all board certified in Hospice and Palliative Medicine

  • 80 new consults/month in hospital (roughly 3/day)

  • HOET part-time RN, hospital social work and clergy

  • ½ day clinic twice monthly (4 – 5 patients)

    • primarily pain management

Slide 44

Texas Palliative Care (TPC)

Hospital consults

  • “having the talk”

  • concerns R/T life support (withholding or withdrawing)

  • medical futility, family insistence on care, family disagreement

  • pain and symptom management

  • medical evaluation regarding patient capacity

Slide 45

TPC Hospital Consults

  • 30-40% - 1 time consult resulting in agreement on withdrawal of life support (resulting in death or transfer to hospice)

  • 30–40% - multiple MD or RN visits to discuss options, answer questions, provide emotional and psychosocial support -resulting in death or transfer to hospice

  • 15-20% - multiple MD or RN visits resulting in transfer to skilled care (home health, nursing facility, rehab, or aggressive care)

  • 2% - strictly pain and symptom management; followed in clinic

Slide 46

TPC benefits

  • Rate of hospital readmission has declined significantly on all patients consulted

  • Decreased length of hospital stay, especially critical care

  • + 50% of all consults enroll in a hospice program (reinforces the skill needed for end of life prognostication)

Slide 47

Coping with Cancer StudyNCI and Dana-Farber Cancer Institute October 2008

  • Patients who recalled having end of life talks with their physicians:

  • were more likely to accept that their illness was terminal;

  • preferred comfort care over life-extending therapies;

  • received less aggressive medical treatment, such as resuscitation or admission to an intensive care unit;

  • and enrolled earlier in hospice programs.

Slide 48

Coping with Cancer Study

  • More aggressive medical care was associated with worse patient quality of life and worse adjustment by patients' bereaved caregivers.

  • Moreover, 6 months after the patients died,

  • their family members were much less likely to experience persistent major depression.

Slide 49

Excerpts from HOET family interviews

“When the doctor told us it was time for hospice, I was surprised.”

“I don’t know what I expected… that at the end, we would just disappear and arrive in heaven….

I never thought about it.”

Slide 50

  • Our every impulse is to fight….

  • and we want choices, but,

  • Hope is not a plan.

Slide 51

Everyone Wants To Go To Heaven….But Nobody Wants to Die


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