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Advanced state Parkinson’s

Learn about the stages and symptoms of Parkinson's disease, and discover important information about end-of-life care options, including palliative care and hospice. Explore resources for caregivers and understand the concept of aid in dying.

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Advanced state Parkinson’s

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  1. Advanced state Parkinson’s Nelson Hwynn, do, FAAN Co-director deep brain stimulation center Scripps clinic medical group

  2. Parkinson’s - Earlier stages • Tremor • Slowness • Stiffness • Shuffling steps

  3. Honeymoon phase

  4. Mid-Later stages • Symptoms increase • Wearing off • Start getting other symptoms of Parkinson’s (balance issues, word finding issues for example)

  5. Much Later stages • Quality of life may get more difficult • Balance issues may progressively get worse • Swallowing may be an issue • Cognitive impairment may progressively get worse • Psychological distress may progressively get worse

  6. Some possible symptoms • Motor features • Tremor • Stooped posture • Shuffling steps • Rigidity • Freezing • Soft speech • Slowed movements • Non-motor features • Loss of smell • Constipation • Sleep issues • Fatigue • Cognitive issues • Mood issues

  7. Non-motor manifestations • Neuropsychiatric • Anxiety • Depression • Apathy • Lack of pleasure • Irritability • Frontoexecutive dysfunction • Dementia • Psychosis • Slowed thinking • Autonomic manifestations • Orthostatic hypotension • Sweating too much/too little • Dry mouth • Heat or cold intolerance • bladder dysfunction • Erectile dysfunction • Constipation/gastroparesis • Sensory dysfunction • Reduced sense of smell • tingling • Pain

  8. More non-motor symptoms • Sleep • REM sleep behavior disorder • Sleep fragmentation • Sleep attacks • Excessive daytime somnolence • Restless legs syndrome • Periodic limb movements of sleep

  9. Barriers to Excellent End-of-life Care for Patients with Dementia. Sachs GA et al. J Gen Intern Med 2004; 19:1057-1063

  10. Barriers to Excellent End-of-life Care for Patients with Dementia. Sachs GA et al. J Gen Intern Med 2004; 19:1057-1063

  11. Life expectancy* *Ishihara LS et al., J NeurolNeurosurg Psychiatry 2007

  12. 9/12 – never forget • Doctors/clinic providers • medications • Physical therapy (gait and balance) • Occupational therapy (optimize activities of daily living) • Speech therapy (speech and swallow) • Psychology/counselling

  13. Palliative care • Not just “end of life” care • W.h.o. definition: an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual

  14. Get the estates in order • Medical Durable power of attorney • Estate Durable power of attorney/executor of estate • Living will

  15. Caregiver burnout • Caregivers/carepartners – friends, family, significant others, spouses • Can feel socially isolated from increasing caregiving • Can be unfair/lopsided in amount of contributions from others Miyasaki J. Palliative Care in Parkinson’s disease. CurrNeurolNeurosci Rep (2013)13:367

  16. Getting help • Professional home caregivers can be helpful (cost about 25 dollars/hour) • Placement (residential facility/independent living, assisted living, memory care units, board and care) • Short term care insurance/Long term care insurance

  17. resources • VA insurance (great benefits) • Guardian angels of san diego (volunteer caregivers for support) • Ihss (in home supportive services) – for low income families • Southern caregiver resource center (800-827-1008) • Social worker help

  18. hospice • Reduce invasive treatments • reduce hospitalization • Opportunity to spend final days at home • Comfort • Helps with death certificate • Appropriate for life expectancy less than 6 months

  19. Hospice appropriate consideration • Terminal condition • Rapid disease progression • Non-ambulatory • Loss of meaningful conversation

  20. Hospice appropriate consideration • >10% weight loss • Recurrent infections (aspiration pneumonia, kidney infections, sepsis, fever, pressure sores) • Multiple hospitalizations

  21. hospice • Covered by medicare • Can Stay at home • Hospice physician • Hospice nurse • Social worker Information obtained from Medicare.gov

  22. hospice • Chaplain • Medical equipment (wheelchair, hospital bed, bandage, catheters) • Grief and loss counseling for patient and loved ones • Physical therapists/occupational therapists • Speech therapists • volunteers Information obtained from Medicare.gov

  23. statistics • 125,242 patients who died with parkinson’s diagnosis • 0.6% used hospice • 43% died in the hospital • 9.7% died at home (17% of general elderly patients died at home) Boersma and Miyasaki. Palliative care and neurology: Time for a paradigm shift. 2014 Neurology, 83(6)561-567

  24. Right to die • Death with dignity • Aid in dying • Physician Assisted suicide

  25. Aid in dying • First passed in Oregon 1997 • Passed in California June 9, 2016 • Also allowed in Washington, Vermont, Colorado, Hawaii, washington dc • Controversial

  26. Aid in dying timeline • Suspended 5/15/18 by riverside county district court • Attorney general filed appeal immediately • 3 weeks later – appellate court ruled to re-instate patient’s rights for aid in dying

  27. Vatican ethicist response to Brittany maynard’s death •  "Suicide is not a good thing. It is a bad thing because it is saying no to life and to everything it means with respect to our mission in the world and toward those around us."

  28. Aid in dying eligibility • Must be at least 18 years of age • Terminal disease and end of life (6 months life expectancy) • Have capacity to make decision for themselves • Be able to self administer • Decision Cannot be made under undue coercion or influence of others • Submit 2 oral requests at minimum 15 days apart, then submit written request • 2 doctors must approve that patient is terminal and has capacity to make decisions

  29. options • Seconal (secobarbital) • barbiturate • More expensive • Powder, mix in liquid, drink • Quick, more reliable • Ddmp2 • Less expensive • Digoxin, diazepam, morphine, propranolol • Time to death may be more prolonged

  30. “No one wants to die. Even people who want to go to heaven don’t want to die to get there” • - Steve jobs • Stanford commencement speech 2005

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