Gaps in end of life care
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GAPS IN END OF LIFE CARE. BY MICHAEL MARSCHKE, MD MEDICAL DIRECTOR OF HORIZON HOSPICE. DEATH & DYING 2005. 80% of Americans die in Institutions today 90% still die of a chronic illness 100% of patients die. WHAT DYING CAN BRING.

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GAPS IN END OF LIFE CARE

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Gaps in end of life care

GAPS IN END OF LIFE CARE

BY

MICHAEL MARSCHKE, MD

MEDICAL DIRECTOR OF HORIZON HOSPICE


Death dying 2005

DEATH & DYING 2005

  • 80% of Americans die in

    Institutions today

  • 90% still die of a chronic illness

  • 100% of patients die


What dying can bring

WHAT DYING CAN BRING

  • Physical suffering – pain, dyspnea, weakness, vomiting, constipation, weight loss

  • Loss of independence – cannot do own ADLs, incontinence, loss of decision-making ability

  • Psychologic distress – depression, fear, feelings of being burdensome

  • Social isolation

  • Financial pressure

  • Spiritual distress


Barriers to a dignified comfortable death

BARRIERS TO A DIGNIFIED, COMFORTABLE DEATH

  • Undue physical suffering

  • Emotional turmoil

  • Financial constraints

  • Family stress

  • Cultural barriers

  • Poor communication

  • Spiritual concerns

  • Institutionalization

  • Lack of bereavement


Physical suffering

PHYSICAL SUFFERING

  • What are the most common symptoms in the dying patient?

  • How good are we at pain control?

  • <5% of medical schools have formal courses on the care of the dying

  • What are the patient’s concerns?

  • Differing goals

  • Nutrition, hydration issues


Barriers to narcotic use

BARRIERS TO NARCOTIC USE

  • Physicians unfamiliar with proper use and in past felt it was being monitored

  • Tolerance effects

  • Fear of side effects

  • Ethical issues – double effect

  • “Street drugs”

  • Fear of addiction


Emotional turmoil

EMOTIONAL TURMOIL

  • Emotional ‘stages’ of death

  • Psychologic impact on physical suffering

  • Impact on the family

  • Euthanasia/suicide


Financial constraints

FINANCIAL CONSTRAINTS

  • Impact on hospice care

  • Impact on the family

  • Hospice vs. non-hospice

  • “I don’t want to be a burden”


Family stress

FAMILY STRESS

  • Burdens of care

  • Burn-out

  • Leave of absence

  • Handling the patient’s care needs/education


Cultural barriers

CULTURAL BARRIERS

  • Role of culture in death and dying

  • Unfamiliarity of cultural rituals in an urban area

  • Role in suffering

  • Road blocks to care


Poor communication

POOR COMMUNICATION

  • Physician’s difficulty in presenting bad news

  • Physicians’ personal fears

  • Being hopeful vs. realistic

  • Mis-information

  • Lack of advanced directives

  • Caregiver communication


Spiritual concerns

SPIRITUAL CONCERNS

  • Meaning and purpose of life

  • Completion

  • How they impact on suffering

  • Role of physicians with spiritual concerns


Institutionalization

INSTITUTIONALIZATION

  • Only 15-20% of the dying receive hospice care, and 80% die in institutions

  • Breakdown of family unit

  • Pushing death away

  • Impersonal nature of institutional death


Lack of bereavement

LACK OF BEREAVEMENT

  • Little in the way of bereavement programs in many areas

  • Unresolved grief

  • High risk period after spousal death

  • Poor contact by MD

  • Get on with life


How does a hospice address these barriers

Physical suffering -

Emotional turmoil -

Multi-disciplinary

Experts in chronic pain

High pain relief

Concentrate on what the patient would want

Multi-disciplinary

Social worker on call

Alleviating suffering can prevent suicide

Being there

HOW DOES A HOSPICE ADDRESS THESE BARRIERS


How does hospice address these barriers

Financial constraints –

Social worker

Hospice pays for more home care

Indigent care

Volunteers

HOW DOES HOSPICE ADDRESS THESE BARRIERS


How does hospice address these barriers1

Family stress -

Cultural barriers-

CNA, volunteer help

Social work support

Respite care

Education

Volunteers from different backgrounds

Learn about their approaches/needs

Interpreters

HOW DOES HOSPICE ADDRESS THESE BARRIERS


How does hospice address these barriers2

Poor communication –

Spiritual concerns -

Find out what the patient knows and wants to know

Be realistic

Open lines of communication

Chaplains

Accept and be open about how their spirituality affects them

Life review

HOW DOES HOSPICE ADDRESS THESE BARRIERS


How does hospice address these barriers3

Institutionalization

Lack of bereavement -

Hospice is not a place

80% of care done at home

Hospice stays involved for 13 more months

Bereavement team

Support groups

HOW DOES HOSPICE ADDRESS THESE BARRIERS


What can you do as a future physician

WHAT CAN YOU DO AS A FUTURE PHYSICIAN

  • Realize your key role in this passage of your patient’s life

  • Learn how to use narcotics the right way

  • Be open with communication and plan ahead

  • Use other disciplines

  • Understand your patient’s wishes

  • Alleviate suffering

  • Realize your own vulnerabilities

  • Recognize the naturalness of dying


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