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Family-centred palliative care in rural NZ

Family-centred palliative care in rural NZ. Kate Grundy and Wayne Naylor March 2011. Format. Palliative Care in 2011 International trends Illness trajectories NZ perspective Palliative Care Council of NZ (PCC) Audience participation/ feedback. Eventually, everyone dies….

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Family-centred palliative care in rural NZ

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  1. Family-centred palliative care in rural NZ Kate Grundy and Wayne Naylor March 2011

  2. Format • Palliative Care in 2011 • International trends • Illness trajectories • NZ perspective • Palliative Care Council of NZ (PCC) • Audience participation/ feedback

  3. Eventually, everyone dies… • 1967, Cecily Saunders opened St Christopher's Hospice • Much has been learned since about caring for cancer patients at the end of life • Palliative care is a medical success story • These lessons have been inadequately appreciated by doctors treating patients dying from causes other than cancer • Early recognition of those patients with advancing illness who would benefit from supportive and palliative care is the key to good management • “Would I be surprised if this pt died within the next year?”

  4. Public awareness • There is still a lack of public openness of death • May have negative consequences for quality of care at the end of life • Fear of the process of dying • Lack of knowledge about how to request and access services • Lack of openness between close family members • Isolation of the bereaved • Virtually all public commentary about dying is around PAS/euthanasia or horror stories about poor care

  5. High professional profile • Treatment and care towards the end of life: good practice in decision making (GMC 2010) • Early PC for metastatic lung cancer - NEJM 2010 • NZMA Medspeak –2010 • “End of life care – what do our patients really want?” • Long-term conditions – shift to community-based care • “PC beyond cancer” - most wanted topic poled by BMJ • Joined up thinking – May 2009 • Spotlight on PC (2010) – sponsored by British Heart Fdn • BMJ Supportive and Palliative Care - new peer reviewed journal to be launched in April 2011

  6. International Trends Advance Care Planning Growing momentum in NZ…. End of Life Care New “buzz word” – emotive but clear Profile of quality end of life care is low Not just the remit of Specialist Palliative Care -puts the onus on everyone to think about their own practice and their own services Essential component of health service planning

  7. Hospice and Palliative Medicine; New Subspecialty, New Opportunity T E Quest et al, Annals of Emergency Medicine, Vol 54, No 1, July 09

  8. US figures for patients >65 • 20% will die young due to an illness with a relatively short final decline (weeks to months) – typical of many cancers • 25% will die by a slow decline, punctuated by dramatic exacerbations with a high chance of “sudden” death – typical of COPD, CCF • 40% have a very poor long term functional status with slow decline (dementia, younger patients with MND and stroke)

  9. Improving EOL care EOL care is an important public obligation Approx 80% of deaths have a dying process that occurs over a few weeks to many months Only 20% occur suddenly/unexpectedly More assistance is needed to support “aging in place” and “dying in place” More assistance is needed to prevent carer fatigue and burnout Researching a Best Practice EOLC Model for Canada WILSON et al, Canadian J of Aging, 2008

  10. Transition to PC • Chronic condition management requires timely transition to palliative and end of life care • Examples are COPD, CCF and Diabetes • Simply observing gradual deterioration is not good enough • Preferences for EOLC cannot be predicted as reliably as for acute care • Access to palliative care services may not always be possible or necessary but some degree of palliative care need will be universal….. • Structuring services appropriately is challenging

  11. Advance Care Planning UK, Australia and US Interest and expertise in NZ (ACP c0-operative) A process of ascertaining patient’s goals, values and preferences… Specific decisions or directives can be made Advance care plans/advance directives and EPA DNACPR orders Significant financial, practical, ethical and medico-legal implications

  12. Palliative Care in NZ • Major developments in recent years • More services, particularly in acute Hospitals • More PM trainees (targeted MOH funding from 2009) • Palliative Care Council of New Zealand (PCC) • Palliative Care Advisor in the MOH • NZ definition in Feb 2007 • Role of the Specialist (medical, nursing, allied health) formalised to include support & education • Acknowledges that most PC is provided by “Generalists” • HNZ standards being developed that will be applicable to all health care settings

  13. Primary Care • Palliative Care is part of your core business • NOT just cancer • Family centred • Utilises the resources of the community • Multi-disciplinary • Good integration and communication is paramount • Liaison with secondary services • JOINED UP THINKING, Nigel Hawkes, BMJ 2009 • Liaison with Specialist Palliative Care/Hospice for direct advice and support as well as education

  14. Rural context • Teamwork is critical • Doctors • Nurses (including Nurse Practitioners) • Community Pharmacists • Wider community resources • Rural Hospitals • Vital resource for PC • Primary/secondary interface • Hospital PC teams need to identify links/processes/allies • Returning patients to their community is often vital • Even when they are unstable/deteriorating

  15. Challenges and Opportunities • “Family matters” • Patient and family-focussed • Ask – it might just be possible! • Massive fluctuations in work load • Bursts of great activity and pressure • Tiring but rewarding • Resistance to “interference” • Clear about goals of care • Requires shared identification and articulation of the issues • Honest and deliberate communication (gentle)

  16. Difficult pain Poorly opioid sensitive Difficult dyspnoea Fear of suffocation Bowel obstruction Agitated delirium Patient/ family distress Requests for sedation and euthanasia…. Referral to PC Services

  17. Difficult cases…. • Physical issues • Ethical issues • Complex social situations • Existential/ spiritual distress • Family distress • Team conflict • “Fresh eyes”

  18. One brief example…..

  19. Palliative Care for COPD • 20% deaths in the UK are due to lung disease • Lung cancer, pneumonia and COPD • By 2020, COPD will be 3rd leading cause of death globally • Palliative care readily available for pts with lung cancer • Survival figures for conditions such as severe COPD and Fibrosing Alveolitis are as poor as for lung cancer • 2 yrs after an acute exacerbation - 49% mortality • 5 yr survival with severe COPD - 30% men, 24% women • Communication is often sub-optimal (EOL decisions) • Palliative care support is less available Partridge et al 2009 • NZ (2007) –4000 respiratory deaths (60% not cancer)

  20. Patient questionnaire Gardiner et al 2009 • Rated well on listening and answering questions • Rated poorly on discussing prognosis, what dying might be like and spiritual/religious issues (i.e. advance care planning) • Many patients seemed unaware they could die of their chest condition and none had discussed this with a HP • Those who mentioned death were concerned about how they would die and were fearful of dying of breathlessness and of “suffocating” • Fearful of a distressing and protracted death

  21. Considering palliative approach • In contrast to other long term conditions, COPD is perceived by pts and families as a “way of life” • Story of their illness has no clear beginning (indistinguishable from their life story) and an unpredictable and unanticipated end • Rather than looking for a clear transition point, holistic assessments are needed • Aim to progressively integrate supportive care • Palliative care provision for progressive COPD needs to begin before dyspnoea becomes intractable • Identify a “trigger” – be proactive

  22. Positive outcomes Rocker et al 2007 • Informed decision-making • Resuscitation and other EOL issues • NIV for acute exacerbations rather than ICU • Improved self management • Planned approach to dyspnoea (action plan) • Community support • Crisis intervention in the home • Palliation at home for trial period • Increased GP involvement

  23. Challenges…..

  24. Managing transitions

  25. Would my pt benefit from PC? • Ask • Does the patient have an advanced long term condition, a new diagnosis of a progressive life limiting illness or both? • Would you be surprised…….? • Look for one or more general indicators • Poor performance status • Progressive weight loss (>10% over past 6 months) • Two or more unplanned admissions in past 6 months • Pt in HLC or requires significant care at home

  26. Also… • Look for two or more disease-related indicators • Heart disease (SOB at rest, renal impairment, cardiac cachexia, NYHA class 1v heart failure, two or more admission for IV therapy in past 6 months etc) • Kidney disease (eGFR <15ml/min, conservative treatment on basis of c0-morbidities, new life-limiting condition such as cancer etc) airway • Respiratory disease (severe obstruction, LT Oxygen therapy, SOB at rest, low BMI, repeated admissions etc) • Liver disease (alb <25, ascites, HCC) • Cancer (poor performance status, persistent symptoms) • Also for neurological disease and dementia

  27. Is my patient dying? Clinical indicators for terminal care Q1 Could this patient be in the last days of life? Q2 Was this patient’s condition expected to deteriorate in this way? Q3 Is further life-prolonging treatment inappropriate? Q4 Have potentially reversible causes of deterioration been excluded? If the diagnosis of dying is in doubt, give treatment and review within 24 hours If the answer to all four questions is “Yes”, plan care for a dying patient Both tools taken from: Boyd and Murray, BMJ 2010

  28. Barriers to “diagnosing dying” • Hope that the patient may get better • No definitive prognosis • Lure of unrealistic or futile interventions • Disagreement amongst clinicians • Failure to recognise key signs • Lack of knowledge about prescribing • Poor communication skills • Fear of hastening death • Concerns about resuscitation • Cultural/spiritual/medicolegal issues Ellershaw and Ward, BMJ 2003

  29. Tools for spiritual well being • Excellent communication • Relationships of trust • Understanding and empathy • Affirmation of feelings • Keeping promises • Maintaining hope • Hope implies a sense of connection • Hope shifts with changing realities • A new focus of hope can energize patients even in the last days of life…..

  30. Question One What would your ideal palliative care system look like?

  31. Question two What do you require from you local palliative care service/team?

  32. Question three In your opinion, what are the main priorities for the Palliative Care Council?

  33. Question four How could a GP practice /organisation formalise, demonstrate and promote a commitment to palliative care for their community?

  34. Concluding thoughts • Preparing patients and families for what lies ahead can be extremely worthwhile and rewarding • Invest in understanding the role of ACP • MoH document soon to be released which clarifies definitions and the medico-legal framework in NZ • The relationship with your local specialist palliative care service is worth fostering! • Remember…. • Palliative care is as much about living well as dying well

  35. References

  36. Articles • Joined up thinking, Nigel Hawkes: BMJ Vol 338, May 23, 2009, • Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, Temel et al, NEJM 363;8, Aug 19, 2010 • Dying matters: let’s talk about it: Jane Seymour et al, BMJ2010; 341:c4860 • Recognising and managing key transitions in end of life care: Kirsty Boyd and Scott Murray, BMJ2010, 341:c4863 • Living and dying with severe COPD: multi-perspective longitudinal qualitative study: Pinnock et al, BMJ2011; 342:d142 • Whither general practice palliative care: G Mitchell, Australian family Physician Vol 35; No 10. October 2006

  37. Resources • Treatment and care toward the end of life; good practice in decision making • General Medical Council, July 2010 • Clinical practice guidelines for communicating prognosis and end of life issues with adults…. • MJA 2007; 186(12 Suppl): S77-S108 http://www.mja.com.au/public/issues/186_12_180607/cla11246_fm.html • The Gold Standards Framework (UK) http://www.goldstandardsframework.nhs.uk/GSFInPrimary+Care • PCC - http://www.cancercontrolnz.govt.nz/aboutuspcc • David Wilson (Rural GP rep) – davidwilson.mbmc@gmail.com • Ron Mueck Exhibition - Christchurch Art Gallery Jan 2011

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