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