omt philosophy on how to deal with end-of-life …...to deal with end-of-life and aging parents...
TRANSCRIPT
OMT Philosophy on how to Deal with End-of-Life and Aging Parents
Objectives
Audience will be introduced to models of end-of-life care
Participants will focus on how Osteopathic training prepares the physician to optimally care for the dying patient
Learners will gain information on optimal symptom management at the end-of-life
A. T. STILL
u “[Dr. Still] eventually named his system osteopathy, perhaps too narrowly. The word –literally ‘bone suffering’ – stands for more than a system of manual medicine…. ‘It was not a method of treatment at all. It was a principle upon which all treatment might be based.’ That principle was at once simple and profound: the human organism innately possesses all the agencies required for its own healing.”
u Dry Bone p. 5 with quote from [The Old Doctor, Journal of Osteopathy, Kirksville, Missouri, 1932]
Elements of end-of-life experience
Fixed characteristics of the patient
Modifiable dimensions of the patient’s experience
Care-system interventions
Outcomes – overall experience of the dying process
Rational treatment is based upon an understanding of the basic principles of body unity, self-regulation, and the interrelationship of structure and function
Fixed characteristicsof the patient
ReligionRace, ethnicityand culture
Diagnosis, prognosis
Socioeconomicclass
Modifiable dimensions
Psychological,cognitive symptoms
Physicalsymptoms
Caregivingneeds
Hopes,expectations
Economicdemands
Social relationships, support
Patient
Spiritual, cultural,existential beliefs
Health system interventions
Family /friends
Community
Health professionals
Institutions
Patient
Outcomes
Qualityof life
Utilization
Satisfaction
Pain /symptom
relief
Patient
How americans diedin the past . . .
Early 1900saverage life expectancy 50 yearschildhood mortality highadults lived into their 60s
Prior to antibiotics, people died quickly
infectious diseaseaccidents
Medicine focused on caring, comfort
Sick cared for at home
with cultural variations
End of lifein America today
u Modern health care
u Still only a few cures
u live much longer with chronic illness- “our aging parents”
u dying process also prolonged
u Shift in focus to “Death is the enemy”
u Place of death
u 90% of respondents to NHO Gallup survey want to die at home
u Death in institutions-
u 1949 – 50% of deaths
u 1958 – 61%
u 1980 to present – 74%
u 57% hospitals, 17% nursing homes, 20% home, 6% other (1992)
Sudden death, unexpected cause
u < 10%, MI, accident, etc
Death
Time
Hea
lth S
tatu
s
Steady decline, short terminal phase
Steady decline, short terminal phase
Slow decline, periodic crises, sudden death
Osteopathy recognizes death as a natural phenomenon
u “Life means eternal reciprocity that permeates all nature”
u “And that faultless perfection, Still maintained, should extend to all phases of nature’s cycle-including death. “We are in the universe therefore we are with God and help to compose that great all, and journey as it is journeys. That great compound is eternal, so are we. We have lived, do live and will live out the full number of days of the universe.”
u Dry Bone p293
Essential Components of Palliative Care
Twycross RG. Introducing Palliative Care. 1996
Symptom Relief
Psychosocial Support
Teamwork&
Partnership
Life-Prolonging Treatment
Openness
Honesty
Hope
Hospice vs. Palliative Care
u HOSPICE
6 months or less prognosis
Defined by Medicare/Insurance benefit
Forego life prolonging Rx
Levels of care – inpatient, home, respite, hospice facility
Goals
u PALLIATIVE CARE
Traditional Medicare/Insurance benefit
Anytime during illness, even at time of diagnosis
No need to forego life-prolonging Rx
Goals are the same
Hospice
u Why is the “H” word scary
u “family feels they are causing death of their loved one”
u “give up my doctor”
u “die faster”
u code status
u “she was fine a week ago”
u “it’s not time yet”
Hospice supporting the dying patient
Nursing with 24 hour nurse on call
Cover appropriate equipment/meds
Chaplain
Social Work
Physician services but can keep own physician
Aide services
Most with music therapy
HospicePalliative care
Curative / remissive therapy
Presentation Death
Last Months of Living/Common Course
u Identifying who may be dying
u “Terminal illness” with disease progression
u Multiple hospital readmissions/ED visits
u Structure and function are reciprocally interrelated
u Not eating/Impaired nutritional status
u Weight loss (>10% in 6mos)
u Serum Albumin < 2.5 gm/dl
u Both Chol <155 and Hct < 41 mg/dl
u Diminished functional status
u Karnofsky Performance Status
u Dependence in at least 3 of 6 ADLs
u Behaviors – especially with dementia, cognitive issues
Caring for the Aging/Dying Parent
Do an advanced directive NOW-have appropriate paperwork in place
Handbook for Mortals- Joanne Lynn, MDGOALS OF CARE- will treatment help meet these goals
Check your badge at the door
Contemplate your siblingsWho is primary caregiver and give deference to themWho will struggle the most
Have conversation with your parent with all siblings present
Separate medical from legal issues
Contemplate caregiving plan
Caring for the Aging/Dying Parent
Who has control? Sense of Abandonment?
The body is capable of self-regulation, self-healing and health maintenance
Making move from patriarch/matriarch to dependent
Won’t change who they are
Say NO
If you choose to “give in” – your choice and your consequences
Each child has own relationship with parent and each will deal with parents decline differently
Let them make their own choices Alcohol, smoking, living at home alone
How To Break Bad News
Participants
Timing
Location
Fact-gatheringWhat they knowWhat they want to knowCultural or religious issues
Review information – Allow for uncertainty
Assure continuation of care
Truth-telling
More A. T. Still
u “And that faultless perfection, Still maintained, should extend to all phases of nature’s cycle—including death. ‘We are in the universe therefore we are with God and help to compose that great all, and journey as it is journeys. That great compound is eternal, so are we. We have lived, do live, and will live out the full number of days of the universe.’ [Dry Bone, p. 293 with inserted quote from 24]
Physiologic changes during the dying process
Dependence- common reason for request physician aid-in-dying
Decreasing appetite / fluid intake
Decreasing blood perfusion
Neurologic dysfunction
Pain
Loss of ability to close eyes
Weakness / fatigue
Decreased ability to move
Joint position fatigue
Increased risk of pressure ulcers
• activities of daily living• turning, movement, massage
Increased need for care
Methylphenidate
Decreasing appetite / food intake
Fears: “giving in,” starvation
Reminders
food may be nauseatinganorexia may be protectiverisk of aspirationclenched teeth express desires, control
Help family find alternative ways to care
Decreasing fluid intake . . .
Oral rehydrating fluids
Fears: dehydration, thirst
Remind families, caregivers
dehydration does not cause distressdehydration may be protective
Parenteral Fluids may be harmful
Mucosal/conjunctival care
Decreasing blood perfusion
Tachycardia, hypotension
Peripheral cooling, cyanosis
Mottling of skin
Diminished urine output
Parenteral fluids will not reverse
Neurologic dysfunction
Decreasing level of consciousness
Communication with the
unconscious patient
Terminal delirium
Changes in respiration
Loss of ability to swallow, sphincter control
2 roads to death
Restless
Confused Tremulous
Hallucinations
Mumbling Delirium
Myoclonic JerksSleepy
Lethargic
Obtunded
Semicomatose
Comatose
SeizuresTHE USUAL
ROAD
THE DIFFICULT ROAD
Normal
Dead
Terminal delirium
“The difficult road to death”
Medical managementbenzodiazepines•lorazepam, midazolam neuroleptics•haloperidol, chlorpromazine
Seizures
Family needs support, education
Changes in respiration . . .
u Altered breathing patterns
u diminishing tidal volume
u apnea
u Cheyne-Stokes respirations
u accessory muscle use
u last reflex breaths
u Communication with the unconscious patient
u Touch
u Permission to die
Loss of ability to swallow
Loss of sphincter control
Skin care, catheter Educate family avoidable, skin care
Buildup of saliva, secretions
scopolamine to dry secretions postural drainage positioning Suctioning
Loss of gag reflex
Pain . . .
Fear of increased pain
• persistent vs fleeting expression• grimace or physiologic signs• incident vs rest pain• distinction from terminal delirium
Assessment of the unconscious patient
Schedule meds
Oral, oral liquid, long vs short-acting, SL, rectal, SQ, IV meds
When Prescribing a Medication to the older adult and to the terminally ill patient- it is important to ask…
u “What is the treatment goal?”
u “How can it be monitored”
u “What is the risk of adverse effects?”
u “What is the risk of drug interactions?”
u “Is it possible to stop any of the current medications?”
u Classify meds- harmful, comfort and neither harmful or add to comfort
u EVERY VISIT
u YOUR PARENTS
Twycross RG. Introducing Palliative Care. 1996
Important Resources
Hand Book for Mortals
Getpalliativecare.org
Area agency on aging
Alzheimer’s association
A place for mom
Elder law attorney
The Four Things That Matter Most - I. Byock, MD
I love you, Thank you, Forgive me, I forgive you
Caregiver Stress
Financial and Time burden/expectations
They might not be grateful
You have a choice
Get capacity assessment done if any question about decision making
The body is a unit, the person is a unit of body, mind and spirit
Expression of Wishes in Response to Loss, Futility and Unrealistic Hope
u Clinical Scenario Sample Response
Delivering very bad news I wish I had better news to give you
Responding to unrealistic hopes I wish that were possible. It sounds like all
From a patient or family of us would be would be a lot happier if
that were so.
Responding to demands for It must be very hard to come to the intensive
Aggressive treatment when care unit every day and see so little change.
Prognosis is very poor I wish medicine had the power to turn things
around
Responding to expressions of It sounds like a terrible loss for you. I wish
Loss, grief, and hopelessness it hadn’t turned out this way.
Quill et al. Ann Int Med 2001
Important Steps to Stay in Charge of Your Care
Spiritual needs
Nursing Home “Never put me in a nursing home”
Long-Term Care insurance
Home care
First floor master bedroom with full bath
Important Steps to Stay in Charge of Your Care
Make a Living Trust with an Attorney Protect your assets
See your doctor regularly
Educate yourself
Exercise
Life Review
Do more of what gives you joy
1912 talk entitled Dr. A.T. Still’s Philosophy of Immortality
u “Every evidence that I have found is that the God of Life is an architect, a builder, an engineer and no imperfection can be found –and there is no perfection short of completion, for which I think the spiritual man is retained in the physical body until Nature says it is finished, having absolute perfect knowledge of all requirements for his comfort and happiness. With me it has changed fear and dread to rejoicing at the perfect work of the Great Architect of the Universe, and I am ready to receive all changes that the Architect thinks are necessary to complete the work for which Man was designed. I will close by saying, ‘Know thyself and be at peace with God.’”
[Dry Bone, p. 343-4, quotes The Bulletin of the Atlas and Axis Clubs, September 1912, 13. MOM (Museum of Osteopathic Medicine, Kirksville, MO]
The Death of Ivan Ilych -Tolstoy
u What tormented Ivan Ilych most was the deception, the lie . . . That he was not dying but was simply ill, and that he only need keep quiet and undergo treatment and then something very good would result.
References
EPEC- Educating physicians on end-of-life care curriculum, AMA
Lewis, John. A.T. Still From the Dry Bone to the Living Man. Blaenau Ffestiniog, Gwynedd, United Kingdom: Dry Bone Press; 2012.
Complete Bedside Companion – A no-nonsense guide. Rodger MacFarlane