Psychosocial interventions in neurological palliative care patients and their families

Transcription

1 Psychosocial interventions in neurological palliative care patients and their families Prof. Dr. Maria Wasner (1) Interdisciplinary Center for Palliative Medicine, Ludwig-Maximilians-University, Munich, Germany (2) University of Applied Sciences, Munich, Germany

2 Cases with extreme nursing care needs private nursing insurance spinal cord damage 4% PNS disorders 2% malign. tumorsoma 5% congen. brain damage 4% AIDS 1% brain disorders 82% cachexia 1% other 1% (Quelle: Fritze, Deutsches Ärzteblatt 1999)

3 Neurological patients in PCUs 2008 Germany 8.3% ( PCU, IZP, Munich 22.4% ALS 16 (24%) Malignant brain tumors 15 (22%) Parkinson, PSP, MSA 12 (18%) Dementia 7 (10%) Cerebral hemorrhage 5 ( 8%) Other (MS, stroke...) 12 (18%)

4 Particular challenges for neurological palliative care patients and their families No curative therapies Prolonged diseases, no good times Impairments in mobility Impaired communication Cognitive impairments Personality changes

5 Psychosocial care... is concerned with the psychological and emotional wellbeing of the patient and their family/carers, including issues of self-esteem, insight into and adaptation to the illness and its consequences, communication, social functioning and relationships. (National Council for Hospice and Specialist Palliative Care Services. Feeling Better: Psychosocial Care in Specialist Palliative Care 1997, occasional paper 13)

6 Case Study Sabine, 33 years, glioblastoma since 1 year Symptoms: headache, vertigo, often confused, sometimes aggressive Daughter, 5 years old Partner (not the father) unemployed at the moment, cares for Sabine at home, religious

7 Case Study - Problems Sabine: Who cares for her daughter after her death? Legacy for her daughter Daughter: Changes in behaviour (aggressive) Partner: Difficulties to accept her deterioriation, distressed I don t believe in God anymore. Financial situation.

8 Which psychosocial interventions are helpful?

9 1. Communication Information needs and wishes from relatives of brain tumor patients (Wasner M et al., Eur J Pall Care 2007; Suppl.: 90) Nobody has told me, that his personality will change and I thought he doesn t love me anymore. (wife, 52 years) 48% sufficiently informed Need for more information on: prognosis, therapeutical options concomitant phenomenons Active listening and respect from the medical staff One person as contact person and coordinator

10 Communicate! Communicate! Communicate!

11 2. Care for the family caregivers Family is central for patient s QoL (Neudert et al. 2001, J Neurol Sci) n=51 100% of ALS-patients named family as one area (out of five) important for their QoL (53% health ) High concordance of depression and distress levels between patients and caregivers (Rabkin et al. 2000, Psychosom Med)

12 Relatives of brain tumor patients: Burden of care Financial support for home care 41% Reducing working time/stop working 41% Health problems 52% Increased risk for psychosom. disorders 35% Increased anxiety values 74% Depression 50% Leisure time 3h/week (0-10h) (Wasner M et al., Eur J Pall Care 2007; Suppl.: 90)

13 Ventilated ALS patients and their caregivers I (Kaub-Wittemer D et al. 2003, J Pain Symptom Managem) 10 8 NIV Trach. Munich Quality of Life Dimensions List n = non-invasive, 21 tracheostomy 0 psyche body everyday life social life

14 Ventilated ALS patients and their caregivers II QoL: Caregiver NIV Trach. would advise their pat. to choose vent. again 97% 75% p=0.008 would choose it for themselves 94% 50% p<0.001 own QoL<patient s QoL 3% 30% p=0.013

15 Sexuality in ALS (Wasner et al, J Neurol 2004) patients(n=33) partners(n=29) strong interest in sexuality 44% 44% high satisfaction with sexual life 44% 43% improvement of overall relationship 60% 44% improvement of sexual relationship 20% 11%

16 Assumptions about Quality of Life in Palliative Care are inaccurate if the family is not included Involvement of the family from the very beginning Griefing support

17 3. Hope and meaning Depression is common in patients with ALS (Albert et al. 2007, Neurology), Parkinson s disease and brain tumors Wish for assisted suicide in ALS patients Fear of becoming a burden to family Feeling isolated Feeling disempowered (Ganzini et al. 1998, N Engl J Med)

18 Spirituality and mental health of ALS patients (Wasner 2008 Spiritualität und Religiosität ) Correlations Spirituality (FACIT-Sp) QoL (SEIQoL), depression (BDI) Patients (n=20) Spirituality - QoL 0.67* Relatives (n=15) Spirituality Subscale Meaning - QoL 0.84* Spirituality - Depression -0.69** -0.72** Spirituality Subscale Meaning Depr ** -0.73** *p 0.05; **p 0.01

19 Check patients and family caregiver for signs of a clinically relevant depression Offer psychological and/or spiritual counselling e.g. Meaning-based psychotherapy

20 4. Provision of practical help Discharge planning nursing service equipment hospice home care team... Legal entitlements Support groups Respite Care Inpatient care (hospice, nursing home)

21 5. Care for the team A multiprofessional team should include someone specializing in psychosocial care, not only for the needs of the patient and family and sometimes to advocate for them in team discussions, but also to take a lead in the care of the professionals; for example, encouraging appropriate personal disclosure and team review of complex pieces of work. (B. Monroe 2006)

22 Core issues of psychosocial care for neurological palliative care patients Communication Care for the caregivers Psychological and/or spiritual counseling Provision for practical help Care for the team

23 Thank you