Adapting to the worsening of the LTMV patient. Mike J. Kampelmacher Home Ventilation Service UMC Utrecht Utrecht, The Netherlands

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1 Adapting to the worsening of the LTMV patient Mike J. Kampelmacher Home Ventilation Service UMC Utrecht Utrecht, The Netherlands

2 Agenda 1. Adaptations in care 2. Education and training 3. Organizational aspects and responsibilities 4. Palliative care + end-of-life issues 5. Conclusion

MPPV and MIE Adaptation needed: more help, care and supervision Family and

3 Case 1 Male, 25 yrs, lives with parents Duchenne muscular dystrophy Started 6 yrs earlier with nocturnal NPPV and AS Needs to commence with MPPV and MIE Adaptation needed: more help, care and supervision Family and friends At home and during outside activities At activity center During admissions

physical assistance Prerequisites for management at home Adequate resources for home care:

4 Adaptations in care for worsening LTMV patients Higher demand for care by family and health care services Greater level of ventilatory dependency Medical complexity Increase in physical assistance Prerequisites for management at home Adequate resources for home care: financial and personnel Adequate numbers of competent caregivers Adequate respite for care givers

5 Adaptations in care (2) Quality of life of family caregivers is negatively influenced by: Tremendous responsibility Sense of duty and obligation to be a caregiver Physical, emotional, financial and social impact of providing care Restrictions on personal time Disturbance of routines Diminished leisure time and outside activities Inability to advance or maintain a job Hudson Med J Austr; Rabkin Amyotroph Lateral Scler; Gelinas J Neurol Sci

Adaptations in care (3) Caregiver burden: significant moral issue in care of LTMV patients Major causes of burden for carers looking after LTMV patients: 1. Underlying disease 2.

6 Adaptations in care (3) Caregiver burden: significant moral issue in care of LTMV patients Major causes of burden for carers looking after LTMV patients: 1. Underlying disease 2. Level op dependency 3. Hours spent under HMV 4. Presence of tracheostomy 5. Home distance from hospital 6. Frequent hospitalisations Caregivers of LTMV patients are potentially at risk for depression (33%), burden, overload and declining health. Practical and effective support for both patients and their families is crucial if LTMV is to be successful. Scott Home Health Care Management & Practice; ACI Respiratory Network consensus statement

accessibility of community service providers Home visits or home care (telemedicine) Improved professional support: personal assistant and/or

7 Adaptations in care (4) Approaches to lessen the burden of informal caregivers: Stability in patient s health Greater affective reward from patients Balanced life style Self-support groups Sufficient support from family members, friends or volunteers Respite care Ready accessibility of community service providers Home visits or home care (telemedicine) Improved professional support: personal assistant and/or skilled nursing care Residential care, nursing home or hospice Huang J Clin Nurs; Evans Can Respir J; ACI Respiratory Network consensus statement

8 Case 2 Male 53, living at home with wife and 3 children ALS, tetraplegic Swallowing problems with pulmonary infections Needs and wants TPPV instead of NPPV Adaptations needed: Increase of (professional) care Organizational aspects: timing, support, safety Education and training Informal care Skilled nursing care Respite care

Education and training for worsening LTMV patients Maintaining and developing knowledge, skills and competence Ongoing assessment of skilled nursing care and ongoing education of home care nurses

9 Education and training for worsening LTMV patients Maintaining and developing knowledge, skills and competence Ongoing assessment of skilled nursing care and ongoing education of home care nurses Clinical competence is more than adequate, baseline performance. Essential characteristics of nurse competency required in LTMV: Knowledge Superior technical skills Interpersonal skills Prioritizing Multitasking Autonomous clinical decision making Patient outcomes Boroughs Home Healthcare Nurse

10 Education and training (2) The best prevention of ventilator and tracheostomy emergencies is a vigilant, well-trained caregiver Viligance includes: Anticipating what might be Calculating the risk Monitoring results and outcome Staying ready to act Boroughs Home Healthcare Nurse

Education and training (3) Structures that foster clinical

sessions Application of evidence-based best practices

be superior to using CD-ROM, the value of experiental

11 Education and training (3) Structures that foster clinical competency: Educational training Patient care review sessions Application of evidence-based best practices during training Although simulation training has shown to be superior to using CD-ROM, the value of experiental learning with patients cannot be replaced. Schmalenberg Crit Care Nurse

12 Case 3 Male 64, no spouse SCI, tetraplegic, admitted to ICU TPPV for 18 hrs/day Wants to stay at home Organizational adaptations needed: Inform patient about possibilities, risks and responsibilities Search for a nursing home that may fit all demands Check for safety: alarms, electrical current, personnel Intake visit by care provider on ICU Supply of two ventilators which can be connected to central alarm system Wait for definitive acception by care provider

13 Organizational aspects and responsibilities Stieglitz Chron Respir Dis

Organizational aspects and responsibilities (2) No literature on staffing in residential or nursing homes Care provider is responsible for deployment and planning of adequate numbers of competent

14 Organizational aspects and responsibilities (2) No literature on staffing in residential or nursing homes Care provider is responsible for deployment and planning of adequate numbers of competent personnel Factors which may play a role in determing minimal staffing: Ventilator free time Hand function Ability to communicate Cognition and ability to manage Length and frequency of care Distance to patient Possibility to alert a caregiver

15 Organizational aspects and responsibilities (3) 1. HVS recommends patient on support and care based on risk profile and gears this with care provider 2. Care provider informs patient and HVS about care package and repsonse times (urgent and non-urgent) 3. Care provider discusses quality and quantity of care with patient in connecton with the risks and desires of that patient 4. Care provider determines if patient will be accepted given the care which is needed according to the HVS 5. HVS informs patient, care givers and/or care provider about health changes which are relevant for quantity and quality of care

Organizational aspects and responsibilities (4) Detection of worsening the of the LTMV patient by: Home visits by HMV-nurse and HMV-technician Home visits

16 Organizational aspects and responsibilities (4) Detection of worsening the of the LTMV patient by: Home visits by HMV-nurse and HMV-technician Home visits by HMV-physician Daily office hours 9-13h HMV-outpatients clinic Consultation by telephone 24/7 Company support 24 h/7 Assessments of HMV effectiveness at home

17 Organizational aspects and responsibilities (5) Technical issues while adapting to the worsening in LTMV: 1. Replacement of BiPAP-ventilators by more sophisticated ones 2. Ventilator with internal and external batteries 3. Ventilator with appropriate alarms (LP, LV, discon, power failure) 4. Ventilator which may be connnected to alarm system 5. Supplying an (identical) back-up ventilator >16 hrs/day 6. Wheelchair adaptation (construction, stability, power, safety) 7. A plan for power failure and calamities 8. Emergency support by medical equipment company 9. Routine equipment maintenance and quality control 10. Continued caregiver training and support

Organizational aspects and responsibilities (6) Other safety measures while adapting to the worsening: Written information for the patient explaining the implications of surgery, sedative procedures

18 Organizational aspects and responsibilities (6) Other safety measures while adapting to the worsening: Written information for the patient explaining the implications of surgery, sedative procedures and uncontrolled oxygen therapy Preferably, performing procedures in hospital with experience in LTMV and LVR-techniques as well as access to high level monitoring or an ICU Supplying the patient with a medical letter for journeys and holidays Organizing multidisciplinary review and management including: Ø Cardiologist Ø Chest phyisician Ø Dietician Ø ENT-physician Ø Occupational therapist Ø Physiotherapist Ø Rehab physician Ø Social worker Ø Speech therapist

19 Organizational aspects and responsibilities (7) Guidelines may assist to organize (worsening of) LTMV in a safe manner National practice standard developed by care providers Operational since Criteria for professional performance Status: weighty recommendations

20 Case 4 Female 42, living at home with husband and child ALS, tetraplegic, only able to sit Uses morphine for severe back pain Swallowing problems with pulmonary infections Does not want TPPV (living will) instead of NPPV 24/24 Adaptations and actions needed: Home visit by physician and nurse of HVS to discuss end of life Determination of date, place and way of ending life Withdrawal of LTMV at home: GP, palliative team Instruction of GP: technique of withdrawal and symptom management Continuous availability for consultation

21 Palliative care and end-of-life issues In European respiratory intermediate care and high dependency units, an end-of-life decision is taken by the physician for 21.5% of patients admitted Neurologists in different countries reported that >20% ALS patients received TPPV on an emergency basis without an advanced directive Shared decision making (SDM) and advance care planning (ACP) are crucial in proactively determining what treatment and care decisions will be most appropriate for the patient over time, given his/ her values, beliefs and preferences. Nava Eur Respir J; Rabkin Amyotroph Lateral Scler Frontotemporal Degener

22 Palliative care and end-of-life issues (2) ACP should be sought from all patients at risk of LTMV, in particular those with rapidly progressive diseases ACP should result in document to be used when patient is unable to express preferences ACP-themes, which ought to be re-visited regularly, may include: Resuscitation Endotracheal intubation LTMV, including treatment end points Artificial nutrition Artificial hydration Treatment for infections Kidney failure Nava Eur Respir J

23 Palliative care and end-of-life issues (3) A good death : Free from avoidable distress and suffering In general accord with patient s and families wishes Reasonably consistent with clinical, cultural and ethical standards Strong communication between patient and clinicians and carers Failure of physicians to discuss disease progression in the context of LTMV, symptom management and initiate end-of-life discussions is a significant barrier to determining patient preferences Discussing sensitive end-of-life care issues: not too soon and not too late Successful palliative and end-of-life care requires a multi-disciplinary team ACI Respiratory Network consensus statement

24 Palliative care and end-of-life issues (4) Accepted in most countries Withholding Controversial in most countries Withdrawal Terminal sedation Rejected in most countries Physician-assisted suicide Euthanasia

25 Palliative care and end-of-life issues (5) Termination of LTMV: shared decision-making (SDM) Often well-considered and on time Sometimes denial: wellbeing-paradox (5% FTD) Correct information on course of disease and way of dying SDM = emotional process Termination of LTMV: implementation At home, hospice, nursing home Responsibility: GP or institutional physician Advisors: counsellor on palliative care, hospice-physician, HVS S.c. opioids (morfine), benzodiazepines (midazolam), oxygen

26 Palliative care and end-of-life issues (6) Withdrawal of LTMV: terminal weaning or disconnection The intention is not to facilitate or hasten death but to prevent further disproportionate burdens. Time until death depends on: Preferences patients and family Ventilator free time Continuous NPPV: minutes? Continuous TPPV: median time to die 28 min (5 min-18 hrs) No correlation between opiate dose and duration of survival off ventilator Especially as opiates and benzodiazepines do not seem to hasten death, there is no medical, ethical or legal justification for withholding doses necessary to control distressing symptoms Dreyer. J Palliat Med 2012; Campbell. AACN Adv Clin Care 2007

27 Conclusions Adapting to the worsening of the LTMV patient does involve: Strong communication between patient and clinicians and carers Shared decision-making and advanced care planning Role adaptation of patient, family and caregivers Pro-active attitude of professionals Technical and medical adjustments Organizational and professional capacity and compentency These requirements are best met with a practice guideline

28 Thank you for your attention

If patient is 24 hour dependent on NIV and decides to discontinue it, support and forward planning are essential

If patient is 24 hour dependent on NIV and decides to discontinue it, support and forward planning are essential Leicestershire and Rutland MND Supportive and Palliative Care Group Pathway for Preparing to Withdraw Non-Invasive Ventilation (NIV) in Patients with MND This is to be read in conjunction with the Guidelines