RCSI Palliative Care 2025 Update PDF

RCSI Royal College of Surgeons in Ireland Coláiste Ríoga na Máinleá in Éirinn Access to Quality Healthcare – Palliative Care Class DEM Year 2 Course ENDOB Title Palliative Care Lecturer Dr Sally Doherty / Prof Frank Doyle Date 2024  LEARNING OUTCOMES - THANATOLOGY Describ...

RCSI Royal College of Surgeons in Ireland Coláiste Ríoga na Máinleá in Éirinn Access to Quality Healthcare – Palliative Care Class DEM Year 2 Course ENDOB Title Palliative Care Lecturer Dr Sally Doherty / Prof Frank Doyle Date 2024  LEARNING OUTCOMES - THANATOLOGY Describe attitudes to death and dying and stakeholder preferences Define palliative care Discuss inequities of access to palliative care List barriers to diagnosing dying Describe importance of communication regarding diagnosis of dying Describe bereavement, grief and mourning Explore the legal and ethical issues regarding euthanasia, physician-assisted suicide, and death by omission. Attitudes to death and dying “Death is one of the attributes you were created with; death is part of you. Your life's continual task is to build your death.” Montaigne ATTITUDES TO DEATH? BBC: How to have a good death  ATTITUDES IN IRELAND http://edepositireland.ie/bitstream/handle/2262/83090/Weafer-J-2014-Irish-attidudes-to-death-dying-bereavement-2004-2014.pdf https://hospicefoundation.ie/bereavement-news/time-to-reflect-national-survey-findings/  ATTITUDES IN IRELAND 57% think we do not speak about death enough – 56% of people have spoken more to family/friends about death and dying since pre-pandemic 74% prefer home death – 63% prefer home even in final days of life, only 5-6% want to die in hospital Care needs to be improved? http://edepositireland.ie/bitstream/handle/2262/83090/Weafer-J-2014-Irish-attidudes-to-death-dying-bereavement-2004-2014.pdf https://hospicefoundation.ie/bereavement-news/time-to-reflect-national-survey-findings/  PLACE OF DEATH https://hospicefoundation.ie/wp-content/uploads/2021/11/Dying-and-Death-in-Ireland-what-do-we-routinely-measure-how-can-we-improve-2021.pdf  CULTURAL VARIATIONS Differences in definition of death Grieving: fasting, self-harm Rituals for death clash with hospital policy – Burning sage – American Indians – (Die at home) Turn body to face Mecca, read the Koran, close mouth and eyes and cover face, bathe body and cover with white cotton – Muslims – Die close to the ground - Hindu Guring RAR. Health psychology: a cultural approach. Thomson Wadsworth: Belmont. BMJ;327;176-177  PREFERENCES 2 paradoxes – Home death preferred, but minority die at home – Final year is spent at home, but most are admitted to die – => Inadequate community support? Place of death may be determined by other factors – Deterioration of condition requiring intensive care IHF/HSE 2017  PATIENT AND CARER PERCEPTIONS Studies consistently show hospice favoured over hospital care – Lower pain levels – Reducing family distress – Controlling symptoms – Better communication – Better privacy – Long delays for services in hospital – Continuity of care Community care – Practical support lacking – Needed better communication NACPC, DOHC Palliative Med;9:45-54  SATISFACTION WITH HOSPITAL CARE Over half of serious complaints to NHS are about care at time of death – Listening attentively before death reduced posttraumatic stress from 70% to 45% Staff avoidance of dying patients Inadequate symptom control Focus on physical needs – At expense of psychosocial needs Too busy, uncaring attitude Poor communication – Breaking bad news when alone, being too direct, removing hope, appearing insensitive Lack of privacy Use of medical language NACPC, DOHC; Palliative Med;9:45-54  Palliative care To cure, occasionally; to relieve, often; to comfort, always WHAT IS PALLIATIVE CARE? BBC: How to have a good death  WHAT IS PALLIATIVE CARE? “The active care of patients whose disease is not responsive to curative treatment” - World Health Organisation, 1990 Palliative care is the continuing active total care of patients and their families, at a time when the medical expectation is no longer cure. Palliative care responds to physical, psychological, social and spiritual needs, and extends to support in bereavement. The goal of palliative care is the highest possible quality of life for both patient and family. Specialist palliative care services are those services with palliative care as their core speciality and which are provided by an inter-disciplinary team, under the direction of a consultant physician in palliative medicine. NACPC, DOHC  WHAT IS PALLIATIVE CARE? affirms life and regards dying as a normal process neither hastens nor postpones death – Contrast with euthanasia and physician assisted suicide provides relief from pain and other distressing symptoms 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 patient’s 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 NACPC, DOHC  WHAT IS HOSPICE CARE? Hospice care is a term that is often used to describe the care offered to patients when the disease process is at an advanced stage. The term may be used to describe both a place of care (i.e. institution) or a philosophy of care, which may be applied in a wide range of care settings. The terms ‘hospice care’ and ‘palliative care’ are often used interchangeably. Hospice care encompasses all aspects of palliative care. Terminal care - when death is imminent DOHC  NEED FOR PALLIATIVE CARE Ageing population and life-prolonging treatments Requirement Estimated 70% of cancer patients; 20% non-cancer patients https://hospicefoundation.ie/wp-content/uploads/2021/11/Dying-and-Death-in-Ireland-what-do-we-routinely-measure-how-can-we-improve-2021.pdf  (In)Equity of access “We emerge deserving of little credit; we who are capable of ignoring the conditions which make muted people suffer. The dissatisfied dead cannot noise abroad the negligence they have experienced.” J Hinton, 1967 DENNIS: COPD - INEQUITY OF ACCESS BBC: How to have a good death  REGIONAL COMPARISONS IN CARE http://lenus.ie/hse/handle/10147/323551 SPECIALIST PALLIATIVE CARE SERVICES Place of death influenced by service provision Underdeveloped services – die in acute hospitals Developed services – hospice/home death Teams attend to patient and family Medical, Nursing, Physiotherapists, Occupational therapists, Social workers, Speech and language therapists, Pharmacists, Clinical nutritionists, Psychosocial professionals, Spiritual care, Bereavement counsellors  EQUITY OF ACCESS? Approximately 95% of care is for cancer patients – Non-cancer patients may have different needs Poorer access for – Non-cancer deaths – Minority groups – Special populations: Intellectual/physical disability; Prisoners; Intravenous drug users; Children etc. Education, respite care neded PALLIATIVE PRINCIPLES IN HOSPITALS BBC: How to have a good death PALLIATIVE PRINCIPLES IN HOSPITALS ‘Hospice-friendly hospitals’ – Utilise palliative care principles within hospitals – Palliative care team Opportunities to also enhance community care Describe importance of communication regarding diagnosis of dying CLINICAL TRAJECTORY OF CARE OF DYING PATIENTS Diagnosis of dying Recovery Ongoing care Death Care after death BMJ;326:30–4  BARRIERS TO DIAGNOSING DYING Hope that patient may get better Lack of definitive diagnosis Pursuing unrealistic or futile interventions Disagreement about patient’s condition Failure to recognise key symptoms and signs Lack of knowledge about how to prescribe Poor communication with patient/family Concerns about withdrawing/withholding treatment Fear of shortening life Concerns about resuscitation Cultural and spiritual barriers Medico-legal issues BMJ, 326:30-34.  WHEN AND HOW TO DISCUSS ‘DO NOT RESUSCITATE’ ORDERS WITH PATIENTS Do not resuscitate orders (DNACPR) must be discussed with patients/proxies unless they have indicated they do not wish to be involved or the discussion is likely to cause physical or psychological harm The wording should be very clear, and the discussion should be clearly documented in the medical notes – Don’t use colloquialisms Doctors should probably discuss resuscitation with any patient at clear risk of cardiorespiratory arrest, regardless of whether DNACPR is being considered BMJ;350:h2640 doi: 10.1136/bmj.h2640 DIAGNOSING DYING: EFFECTS ON PATIENT AND FAMILY IF DIAGNOSIS NOT MADE Patient and family are unaware that death is imminent Patient loses trust in doctor as his or her condition deteriorates without acknowledgment that this is happening Patient and relatives get conflicting messages from the multiprofessional team Patient dies with uncontrolled symptoms, leading to a distressing and undignified death Patient and family feel dissatisfied At death, cardiopulmonary resuscitation may be inappropriately initiated Cultural and spiritual needs not met All the above can lead to complex bereavement problems and formal complaints about care BMJ;326:30–4 IMPORTANCE OF COMMUNICATION BBC: How to have a good death SERIOUS ILLNESS CONVERSATION GUIDE (CHOOSING WISELY CANADA TOOLKIT) SET UP “I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you that I can make sure we provide you with the care you want and avoid treatments that cause more harm than good – is this okay?” ASSESS “What is your understanding now of where you are with your illness?” “How much information about what is likely to be ahead with your illness would you like from me?” SHARE “I want to share with you my understanding of where things are with your illness..” EXPLORE “What are your most important goals if your health situation worsens?” “What are your biggest fears and worries about the future with your health?” (e.g., Struggling to breathe, being alone, depending entirely on others) CLOSE “How does this plan seem to you?” “I will do everything I can to help you through this.” BMJ 2022;376:e067572 | doi: 10.1136/bmj-2021-067572 Bereavement, grief and mourning BEREAVEMENT, GRIEF, MOURNING Bereavement: the processes occurring after death or loss during which the individual learns to adjust Grief: the subjective feeling (emotional response) caused by the death of a loved one or object Mourning: the expression of grief; influenced by culture  NORMAL GRIEF Feelings: Physical Cognition Behaviours Sadness Disbelief Anger Sensations Confusion Sleep disturbances Hollowness Loss of appetite Guilt Pre-occupation Tightness Absent-mindedness Anxiety Sense of presence Loneliness Noise sensitivity Hallucinations Social withdrawal Breathlessness Dreams of deceased Shock Weakness Avoiding reminders Fatigue Lack of energy Searching for deceased Helplessness Dry mouth Yearning Sighing Emancipation Overactivity Relief Crying Numbness Carrying reminders Visiting reminders Normal grief does not respond to antidepressants  PROLONGED GRIEF DISORDER: ICD-11 Previously called complicated, pathological or abnormal grief Prolonged grief disorder is a disturbance in which, following the death of a partner, parent, child, or other person close to the bereaved, there is persistent and pervasive grief response characterised by longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain Atypically long period of time following the loss (more than 6 months at a minimum) Clearly exceeds expected social, cultural or religious norms for the individual’s culture and context Disturbance causes significant impairment in functioning Can respond to antidepressants https://icd.who.int/browse/2024-01/mms/en#1183832314  TYPES OF COMPLEX/PROLONGED GRIEF Delayed or absent grief –Unable to mourn, conscious or unconscious –Delayed grief can be triggered by a subsequent loss Chronic grief –Experiences the immediate pain for months or years –Often had ambivalent relationship with deceased Masked grief –Grief masked by physical or somatic symptoms that seem unrelated to the loss Exaggerated Grief –Very intense and excessive –Can lead to psychiatric illness  RISK FACTORS FOR PROLONGED GRIEF Unexpected death – Sudden or unexplained (e.g. murder, suicide) Mode of death – Violent Relationship with the deceased – Difficult relationship before the death, ambivalent attachment – Dependent or interdependent attachment to deceased person – Involvement with death unsatisfactory (e.g. no time to say goodbye) Personal factors – Low self esteem – Low trust in others – Previous psychiatric disorders – Previous suicidal threats or attempts – Absent or unhelpful family – History of traumatic losses; multiple losses – Insecure attachment to parents in childhood – Concurrent life stress  EXPECTED DEATHS? Euthanasia: “the act of deliberately ending a person's life to relieve suffering” Physician-assisted suicide, or Medical Assistance in Dying (MAiD): “the act of deliberately assisting another person to kill themselves” and this “differs from palliative or comfort care by allowing the patient to hasten their own death” Death by omission: withdrawing/witholding treatment https://www.nhs.uk/conditions/euthanasia-and-assisted-suicide/ Professional Psychology: Research and Practice, 2023, Vol. 54, No. 1, 2–13. https://doi.org/10.1037/pro0000500  LOCATIONS & ISSUES Where legal? Issues (non-exhaustive) 11 US states Conflicts Between Ethics and Law, Canada Regulations, Organisational demands Australia Competence, Personal Problems Belgium and Conflicts Columbia Avoiding Harm Germany Multiple Relationships Luxemburg Third-Party Requests Netherlands Cooperation With Other Switzerland Professionals Informed Consent Professional Psychology: Research and Practice, 2023, Vol. 54, No. 1, 2–13. https://doi.org/10.1037/pro0000500  MORTALITY BY JURISDICTION JAMA Internal Medicine Published online December 9, 2024  MORTALITY BY JURISDICTION AND DISEASE JAMA Internal Medicine Published online December 9, 2024  CONCLUSIONS Death is taboo Significant barriers to diagnosing and communicating dying Poor satisfaction levels with hospital-based deaths Excellent satisfaction with palliative care, but access is limited Possible to include palliative care principles in hospital care Experience of death may lead to dissatisfaction, prolonged/complex grief Complex legal and ethical issues regarding death  RELEVANT EXTRA READING (IF INTERESTED) Alder B, Porter M, Abraham C, van Teijlingen E. Psychology and Sociology Applied to Medicine. 3rd ed. Churchill Livingstone: London; 2009. pp. 18-19 & 130-131. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003;326:30–4 Executive summary of report available from: – http://www.dohc.ie/publications/national_advisory_committee_on_palliative_care.html Palliative Care Competence Framework Steering Group. (2014). Palliative Care Competence Framework. Dublin: Health Service Executive – http://lenus.ie/hse/bitstream/10147/322310/1/CompetenceFrameworkFinalVersion.pdf National Palliative Care Support Beds Review Subgroup. (2014). Report of the First National Palliative Care Support Bed Review. Dublin: Health Service Executive – http://lenus.ie/hse/handle/10147/323551 http://www.hospice-foundation.ie/ Matthews S, Pierce M, O'Brien Green S, Hurley E, Johnston BM, Normand C, May P. Dying and death in Ireland: what do we routinely measure, how can we improve? Dublin: Irish Hospice Foundation; 2021 Ezekiel, S. Where there is life, there is hope. Debates about normal v abnormal grief: http://bjp.rcpsych.org/content/201/1/9  SUPPLEMENTARY: MORE PATIENT STORIES Aine speaks about her mother and benefits of palliative care for people John talks about how his perception of palliative care has changed getting older and frailer http://www.adultpalliativehub.com/stories/john-joyces-story http://www.adultpalliativehub.com/stories/aine-oriordans-story 0:57 short - https://youtu.be/OMPsxlxpa9Y 0:31 short - https://youtu.be/6kfGlCgepsQ Margaret explains difficulties experienced for her partner living with Anne discusses how her mother was supported in her nursing home dementia and treating pain http://www.adultpalliativehub.com/stories/anne-harriss-story-her-mother http://www.adultpalliativehub.com/stories/margaret-mckennas-story 0:34 short - https://youtu.be/r5z15o64XDQ 0:43 short - https://youtu.be/LCM2Kh05wYE Anne talks of how her sister was reluctant to know about palliative care Margaret talks about her husband’s care and the importance of family http://www.adultpalliativehub.com/stories/anne-harriss-story-her-sister having a voice 0:31 short - https://youtu.be/tdUZkra6EWA http://www.adultpalliativehub.com/stories/margaret-o%E2%80%99mearas-story Carmel explains her husband wasn’t involved in conversations and how 0:43 short - https://youtu.be/TewZQf220Tg they were unprepared Margarita explains how continuity of care would have helped in her http://www.adultpalliativehub.com/stories/carmel-ryans-story husband’s care 0:50 short - https://youtu.be/1U8Va1xxpTY http://www.adultpalliativehub.com/stories/margarita-synnotts-story Caroline talks about her dad’s care and how health professionals did or 0:47 short - https://youtu.be/rNcVwrxfHRs didn’t involve the family Michael describes how his wife and he, a nurse himself, were cared for in hospice http://www.adultpalliativehub.com/stories/caroline-shores-story http://www.adultpalliativehub.com/stories/michael-mcbriens-story 1:03 short - https://youtu.be/digsUg_AHjw 0:46 short - https://youtu.be/-1j9sljwPyg Claire explains how her daughter needed palliative care from she was Olive describes support when her daughter was born prematurely with five days old mitochondrial disease http://www.childrenspalliativehub.com/stories/claire-gray-%E2%80%93- http://www.childrenspalliativehub.com/stories/olive-tumultys-story matilda%E2%80%99s-mummy 1:01 short - https://youtu.be/4qrc7He3TUQ 0:50 short - https://youtu.be/GHMW1-Vc3EQ Tom talks about care for his wife living with MS Dori-Anne feels her daughter got what she wanted in end of life care http://www.adultpalliativehub.com/stories/tom-currans-story http://www.adultpalliativehub.com/stories/dori-anne-finlays-story 0:48 short - https://youtu.be/UZ6w7tnPgyw 0:28 short - https://youtu.be/Lj7TowCi3vo Yvonne speaks about how her sister was treated as a living Evelyn initially didn’t want to see the palliative care nurse person, not a dying person http://www.adultpalliativehub.com/stories/evelyn-wakefields-story http://www.adultpalliativehub.com/stories/yvonne-jacobsons-story 0:53 short - https://youtu.be/8nmXBccnkNA 0:29 short - https://youtu.be/5CopimlR5DY