The Time of Dying Dr Melanie Benson Palliative Medicine Physician - PowerPoint PPT Presentation

The Time of Dying Dr Melanie Benson Palliative Medicine Physician Gippsland Regional Palliative Care Consultancy Service

Itinerary • Diagnosing dying – the last bend in the road • Anticipating needs during the time of dying and anticipatory prescribing • Palliative sedation

What is Palliative care? Palliative care is 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. www.who.int/cancer/palliative/definition/en/

Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications www.who.int/cancer/palliative/definition/en/

What is Palliative Care? • Palliative Approach • Aims to improve the QoL of patients with incurable disease (& their families) through early identification and treatment of physical symptoms and other issues. • Terminal Care • Care of the patient (and family) in the last stages of disease, usually hours or days.

The terminal phase of life. “Imminently dying” = The last “hours” of life.

“You only get one chance to do it right”

Priorities of care for the imminently dying 1. this possibility is recognized and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly. 2. sensitive communication takes place between staff and the dying person, and those identified as important to them. 3. the dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. 4. the needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. 5. an individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion. Sykes et al. Once Chance to Get it Right:understanding the new guidance for the care of the dying person. British Medical Bulletin. Vol 115, Issue 1, 1 September 2015, Pages 143-150.

Diagnosing Dying

Prognostication – a complex equation Physicians’ predictions regarding patients’ survival are frequently inaccurate and systematically optimistic.

How do we miss it? • Trajectories

How do we miss it? • Training • Collusion of hope • Medicalisation until the end of life • Fractured medical care • Communication challenges • Assessment • Prognostic paralysis: • Predicting the unpredictable

What does dying look like

Pattern recognition (Days-Hours) • Functional decline/Fatigue • AKPS • Anorexia • Central – consciousness, cognition, co-ordination • Urinary • Cardiorespiratory • Escalation of physical symptoms

Final Five (Active symptoms to anticipate in the terminal phase)

The Time of Dying - Elements of an end of life plan • Communication • Decisions/Thresholds of care • Medication rationalisation • Anticipatory Symptom Management • Anticipating physical care needs • Anticipating bereavement needs of family • After death

Anticipatory prescribing – 2 scenarios 1. Emergency symptom support: 1. May occur earlier in the disease trajectory. 2. Ensure symptom support whilst assessment takes place 2. Planning for symptom management in the terminal phase ie anticipating the “final five”

Emergency symptom support * • Not all patients referred to Palliative Care Services • Based on assessment and reassessment • May develop symptoms in which having a parenteral medication available would be beneficial whilst reviewing care plan. • May deteriorate into the terminal phase in days-weeks • Special considerations • those who live alone, • history of substance misuse • financial considerations – diversion vs $$

Emergency symptom support * • Pain: an opiate • Dyspnoea: an opiate /benzodiazapine • Emesis: Metoclopramide • Seizures: Clonazepam

Anticipatory prescribing for the terminal phase • Pain – opiate ** • Dyspnoea/Tachypnoea – opiate +/ benzodiazepine • Emesis – metoclopramide or haloperidol * • Respiratory Secretions – anticholinergic • Delirium – haloperidol +/benzodiazapine

Special considerations ** opiate prescription will depend on several factors including previous baseline opioid, organ dysfunction * Anti-emetics – metoclopramide/haloperidol contraindicated in Parkinson’s • Other agents may include cyclizine Ω In the instance of agitated delirium of dying (aka terminal restlessness) – midazolam alone may cause paradoxical agitation and a an antipsychotic may need to be made available

Resources • https://ww2.health.wa.gov.au/~/media/Files/Corporate/general%20d ocuments/Palliative/Evidence_based_guidelines.pdf • GRPCC symptom control algorithm (CPDP) • EMRPCC opioid conversion chart

Communication If these medications have been used they should trigger a reassessment. THEN Conversation about goals/place of care; ongoing symptom management; role or uptitration of syringe drivers.

Support and advice for GPs • GRPCCS is available to advice/support at all times. • During office hours: – Local Pall Care CNC/NP – LRH GRPCC team – Palliative Care Physician for your region • After hours – oncall PC clinician via LRH switchboard

Palliative Sedation Avoiding getting into a pickle!

What is Palliative sedation? • Evolving terminology • Mild vs deep • Continuous vs Intermittent • Acute vs non acute • Primary vs Secondary • Is distinct from the usual care and "process of dying”

Definition Palliative sedation is the: • monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness); • to relieve the burden of otherwise intractable suffering • in a manner that is ethically acceptable to the patient, family and healthcare providers. Cherney et al. European Association for Palliative Care recommended framework for the use of sedation in palliative care. Pall Med 2009

How is it different? • Euthanasia • Physician assisted suicide

Euthanasia Physician Assisted Palliative Sedation suicide Intent To cause the death of To cause the death of To relieve otherwise the patient the patient refractory symptoms Modality - To cause To cause To achieve a level of Medications cardiorespiratory cardiorespiratory sedation that relieves prescribed/ arrest arrest symptoms. administered Outcome Successful Patient dies promptly Level of intervention if the when intervention consciousness that patient dies promptly prescribed is utilised. relieves symptoms achieved. Death occurs some time after symptom relief achieved.

Moral constructs of Palliative Sedation Terminality Refractory symptoms Proportionality Separate from other Treatment Decisions

Separate from other treatment decisions • CPR/NFR • Ceasing other treatments • Eg Chemotherapy, Dialysis • Artificial hydration/nutrition • Diagnosis of dying

Terminality • Reserved for the “last stages of life” or imminently dying • Reduces communication • Paradoxical agitation • Family Distress (Bruinsma JPSM Sept 2012) • Concerns about hastening death if utilized earlier

Refractory symptoms • Refractory- – “all other possible treatments have failed, or by team consensus, based on repeated and assessments by skilled experts, that no methods are available for alleviation within the time frame and risk-benefit ration that the patient can tolerate” Cherney and Portnoy 1994, Morita 2002 • The question of suffering/intolerability – Determined by the patient, or by proxy in collaboration with family/staff » Cherney and Portnoy 1994, Morita 2002 • What if suffering is earlier in the disease trajectory?

Proportionality • Benefit vs Burden • Symptom relief vs reduced ability to communicate with family • Level of sedation • Differentiation between Proportionate Palliative Sedation vs Palliative Sedation to unconsciousness GOAL = To relieve suffering

The Grey Zone • The experience in the coal face • Language used • Practice variation • “Mission creep”