Palliative Care in Adult Neurology

Transcription

1 Palliative Care in Adult Neurology Veronica Bruno, MD, MPH University of Calgary, Department of Clinical Neurosciences CNSF 53 rd Congress Halifax, Nova Scotia

2 Learning objectives 1. To understand the concept of palliative care in the context of advanced parkinsonism. 2. To recognize the relevance of the interdisciplinary team in palliative care in adult neurology. 3. To identify some important practical issues in palliative care for advanced parkinsonism.

3 Disclosure statement Dr. Bruno has nothing to disclose.

4 I. Palliative Care for advanced parkinsonism

5 Palliative care Palliative care is not about end of life. It describes an approach to patient care available from the time of diagnosis through bereavement and may be delivered in conjunction with standard care or through specialized services. Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology Aug 5;83(6):561-7.

6 Why is palliative care important in advanced parkinsonism? Parkinson s disease (PD) and Parkinson-related conditions, such as progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration, are more common than ALS and usually have a longer course of disease. No disease-modifying or effective neuroprotective agents are currently effective for any of these diseases. Different challenges at each stage.

7 The benefits of outpatient PC for PD versus traditional care Different logistics. Initial visits may last more than 2 hours. Family members and informal caregivers are encouraged to attend palliative care appointments. Local disease-specific organizations may be interested in providing social work or other support for clinics. On-site and integrated consultations do make a difference regarding both access and quality of care. Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology Aug 5;83(6):561-7.

8 II. Interdisciplinary team for Palliative Care for advanced parkinsonism

9 PALLIATIVE CARE CLINIC Referring Neurologist Which patients are referred to the palliative care clinic? PD patients with Hoehn and Yahr stage 3 or higher, presence of dementia, presence of psychosis, or significant caregiver strain. Patients in advanced stages of Atypical Parkinsonism. Most patients continue to be followed by their Movement Disorders neurologist and have interspersed visits to the Palliative Care Clinic. FIRST PALLIATIVE CARE ASSESSMENT PATIENT CAREGIVER AND FAMILY EQUIPMENT AND HOME SAFETY

10 Who should be part of the palliative care team for advanced parkinsonism? Core team The patient and family Nurse (coordinator and manager) Medical Clinician (MD and/or NP/PA) Social worker Rehab therapists (OT, PT, Speech) Extended team Palliative Care clinician (MD or NP) Primary care physician Medical specialists Pharmacist Spiritual counselor Speech, PT, OT

11 Key Concepts in the Formation of a Palliative Care Team Clinicians should be specialized in PD, team, PC concepts. Goals of care are patient/family preferences. Vision and values are jointly conceived and shared. Responsibilities and leadership are shared. Emphasis on communication skills. Blurred role boundaries between disciplines. Interdisciplinary team A group of health care professionals from diverse fields who work in a coordinated fashion toward a common goal for the patient. Decisions made by the team. Prizer, L & Browner, N. Journal of PD, 2012; Skelly, R. et. al. Progress in Neurology and Psychiatry

12 III. Practical issues in Palliative Care for advanced parkinsonism

13 What does it mean to improve quality of life in late stage Parkinson disease and parkinsonism?

14 Pain in Parkinson s disease About 60% to 85% of patients with PD report pain. Heterogeneous clinical presentation. Disabling effect on quality of life. The most common types of pain appear to be musculoskeletal (70%) and dystonic (reported in 40%). Antonini A, Tinazzi M. Targeting pain in Parkinson's disease. Lancet Neurol Dec;14(12):

15 Pain in Parkinson s disease Treatment Only 50% of PD patients with pain used analgesics, most often nonopioids. There is no solid foundation of evidence but there is a growing awareness of the problem. Broen MP, Braaksma MM, Patijn J, Weber WE. Prevalence of pain in Parkinson s disease: a systematic review using the modified QUADAS tool. Mov Disord Geroin C, Gandolfi M, Bruno V, Smania N, Tinazzi M. Integrated Approach for Pain Management in Parkinson Disease. Curr Neurol Neurosci Rep. 2016

16 Geroin C, Gandolfi M, Bruno V, Smania N, Tinazzi M. Integrated Approach for Pain Management in Parkinson Disease. Curr Neurol Neurosci Rep. 2016

17 Bruno VA, Fox SH, Mancini D, Miyasaki JM. Botulinum Toxin Use in Refractory Pain and Other Symptoms in Parkinsonism. Can J Neurol Sci Sep;43(5):

18 Bruno V, Freitas ME, Mancini D, Lui JP, Miyasaki J, Fox SH. Botulinum Toxin Type A for Pain in Advanced Parkinson's Disease. Can J Neurol Sci Jan;45(1):23-29.

19 Caregiver burden Why should family caregivers be treated as care recipients? Prone to physical and psychological morbidity. Become socially isolated. Experience psychological distress that is similar to patients. Are often excluded from information and care planning, consequently feel unprepared for their role. Are pivotal to achieving successful home care. May significantly enhance the patient s well-being when their role is well supported. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med Jul;14(7):864-9.

20 Caregiver burden Multidimensional Caregiver Stain Index (MCSI) Six Types of Strain 1. Physical Strain 2. Social Constraints 3. Financial Strain 4. Time Constraints 5. Interpersonal Strain 6. CR demanding/manipulative Caregiver Capacity Physical Health Cognitive ability Social Support Availability (work/family) Finances Skills Assessment Needs of care recipient Stull, D. E. (1996). The Multidimensional Caregiver Strain Index (MCSI): Its measurement and structure. Journal of Clinical Geropsychology, 2(3),

21 Palliative Care Guidelines for family Caregivers American Academy of Neurology Ethics and Humanities Subcommittee (1996). Palliative care in neurology. Neurology 46(3): Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients (2011). Hudson, P et. al. Jr of Palliative Medicine.

22 Caregiver burden Interview to 52 primary caregivers of PD patients referred to the Palliative Care Program. Modified Zarit Caregiver Burden Interview at baseline and 3 months later after the palliative care team intervention. Added items: 1. Has your relative been physically aggressive with you? 2. Has your relative made unwanted sexual advances towards you or others caregivers? Bruno V, Mancini D, Ghoche R, Arshinoff R, Miyasaki JM. High prevalence of physical and sexual aggression to caregivers in advanced Parkinson's disease. Experience in the Palliative Care Program. Parkinsonism Relat Disord Mar;24:141-2.

23 Caregiver burden Interventions included: counselling, demonstration of de-escalation techniques, education regarding neurobehavioral changes in advanced PD, medication management by the caregiver Quetiapine and clozapine were not initiated at the first visit. Bruno V, Mancini D, Ghoche R, Arshinoff R, Miyasaki JM. High prevalence of physical and sexual aggression to caregivers in advanced Parkinson's disease. Experience in the Palliative Care Program. Parkinsonism Relat Disord Mar;24:141-2.

24 Advance care planning Refers to the process of discussion between individuals and their health care providers about medical issues and decisions that may affect them in the future. It can, with the patient s agreement, involve friends and family. This discussion ideally should be documented, regularly reviewed and communicated to key individuals involved in the person s care Walker RW. Palliative care and end-of-life planning in Parkinson's disease. J Neural Transm Apr;120(4):635-8.

25 Advance care planning It might include the individual s concerns, their important values or personal goals for care, their understanding about their illness and prognosis and their preferences for types of care or treatment that may be beneficial in the future and the availability of these. This discussion should be done as early as possible in the course of the disease. Walker RW. Palliative care and end-of-life planning in Parkinson's disease. J Neural Transm Apr;120(4):635-8.

26 Spiritual care The most overwhelming challenge faced by people with PD and their family caregivers was the prospect of profound deterioration and complications associated with the disease, leading to eventual death Evolution of hope through PD: 1. Hope for a cure 2. To be symptom free 3. In late stages, we can and should provide hope For some measure of meaning and quality of life For good quality sleep For relief of pain To participate in family life To have a good death

27 Learning objectives 1. To understand the concept of palliative care in the context of advanced parkinsonism. 2. To recognize the relevance of the interdisciplinary team in palliative care in adult neurology. 3. To identify some important practical issues in palliative care for advanced parkinsonism.

28 We ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Fragment of Gawande, Atul. Being Mortal: Medicine and What Matters in the End Thank you very much for your attention