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

2
DEATH DYING 2005

• 80 of Americans die in
• Institutions today
• 90 still die of a chronic illness
• 100 of patients die

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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

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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

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PHYSICAL SUFFERING

• What are the most common symptoms in the dying
  patient?
• How good are we at pain control?
• lt5 of medical schools have formal courses on the
  care of the dying
• What are the patients concerns?
• Differing goals
• Nutrition, hydration issues

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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

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EMOTIONAL TURMOIL

• Emotional stages of death
• Psychologic impact on physical suffering
• Impact on the family
• Euthanasia/suicide

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FINANCIAL CONSTRAINTS

• Impact on hospice care
• Impact on the family
• Hospice vs. non-hospice
• I dont want to be a burden

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FAMILY STRESS

• Burdens of care
• Burn-out
• Leave of absence
• Handling the patients care needs/education

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CULTURAL BARRIERS

• Role of culture in death and dying
• Unfamiliarity of cultural rituals in an urban
  area
• Role in suffering
• Road blocks to care

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POOR COMMUNICATION

• Physicians difficulty in presenting bad news
• Physicians personal fears
• Being hopeful vs. realistic
• Mis-information
• Lack of advanced directives
• Caregiver communication

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SPIRITUAL CONCERNS

• Meaning and purpose of life
• Completion
• How they impact on suffering
• Role of physicians with spiritual concerns

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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

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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

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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

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HOW DOES HOSPICE ADDRESS THESE BARRIERS

• Financial constraints

• Social worker
• Hospice pays for more home care
• Indigent care
• Volunteers

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HOW DOES HOSPICE ADDRESS THESE BARRIERS

• Family stress -
• Cultural barriers -

• CNA, volunteer help
• Social work support
• Respite care
• Education
• Volunteers from different backgrounds
• Learn about their approaches/needs
• Interpreters

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HOW DOES HOSPICE ADDRESS THESE BARRIERS

• 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

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HOW DOES HOSPICE ADDRESS THESE BARRIERS

• 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

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WHAT CAN YOU DO AS A FUTURE PHYSICIAN

• Realize your key role in this passage of your
  patients life
• Learn how to use narcotics the right way
• Be open with communication and plan ahead
• Use other disciplines
• Understand your patients wishes
• Alleviate suffering
• Realize your own vulnerabilities
• Recognize the naturalness of dying