Palliative Care Insights and Preferences

Access to Quality Healthcare - Palliative Care

• Course: DEM Year 2
• Course Title: Palliative Care
• Lecturer(s): 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 the importance of communication regarding diagnosis of dying
• Describe bereavement, grief, and mourning
• Explore 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 in Ireland

• 70% of respondents ranked being free from pain/managed by medication as most important during final days.
• A large majority (82%) prioritized being surrounded by loved ones.
• Privacy and dignity ranked high (46%).
• Most favored familiar surroundings (42%), a calm and peaceful atmosphere (42%), personal possessions/pets (34%), and trained support (23%).
• Feeling in control of their environment was also important (21%).
• Professional support for emergencies and family/legal/spiritual needs were also key considerations for respondents.

Attitudes in Ireland

• 57% believed they don't talk about death enough.
• 56% talked about death /dying more to family/friends since the pandemic began.
• 74% preferred home death , with 63% wanting to die at home, compared to only 5-6% in hospitals

Place of Death Trends (2013-2018)

• Data shows fluctuating hospital, domiciliary/home death trends, with a general, slightly downward trend in hospital deaths over the years.

Cultural Variations

• Differences in death definitions exist, including culturally influenced grieving practices, which potentially clash with hospital policies.
• Examples include diverse rituals and customs surrounding death, from burning sage among some American Indians to specific Islamic rituals prior to burial at home (i.e., facing Mecca/ reciting Quran/washing/wrapping in white cloth).
• Also, the Hindu custom of dying close to the ground.

Preferences

• 2 paradoxes were observed: the preference for a home death, but with most deaths occurring in hospitals; the preference for home death in one's final months, but most patients being admitted in their last days for in-patient care.
• Inadequate community support is suspected as contributing to this preference/reality mismatch
• The place of death is often influenced by the individual's condition, potentially requiring intense care.

Patient and Carer Perceptions

• Hospice care is favoured over hospital care. Reasons include lower pain levels, reduced family distress, better symptom control, better communication, better privacy, continuity of care, and avoiding long delays in hospital care.
• Community care, however, is often lacking in practical support and communication.

Satisfaction With Hospital Care

• Over half of serious complaints to the N.H.S are about care at the end of life.
• Listening attentively during the dying process helped reduce post-traumatic stress from approximately 70% to 45%.
• Issues include inadequate symptom control, and a focus on physical needs over psychosocial needs, contributing to reports of a poor communication environment with 'uncaring attitudes.'
• There was apparent lack of privacy and use of medical language.

Palliative Care

• "To cure, occasionally; to relieve, often; to comfort, always."

What is Palliative Care?

• Active care for patients whose diseases respond poorly to treatment.
• Ongoing total care of both the patient and their family
• Aims for utmost quality of life.
• Addresses physical, psychological, social, and spiritual needs, including bereavement support.
• Provided by interdisciplinary teams led by physicians in palliative medicine

What is Palliative Care?

• A normal dying process is upheld.
• Alleviates pain and distressing symptoms.
• Integrates psychological and spiritual aspects of patient care.
• Systems of support improve the patient's and family's ability to cope.
• Care focuses on enhanced quality of life and positive influence on the course of illness.

What is Hospice Care?

• Describes care for patients at advanced stages of disease.
• Can refer both to a place and philosophy of care, suitable for a wide range of care settings.
• Frequently used interchangeably with 'palliative care'.
• Encompasses all aspects of palliative care, including terminal care (when death is imminent).

Need for Palliative Care

• Ageing Population and life-prolonging treatments
• 70% of cancer patients, 20% of non-cancer patients require palliative care.

(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

Regional Comparisons in Care

• Data presents the ratio and number of palliative care in-patient beds provided to different healthcare areas over a 6 year period.

Specialist Palliative Care Services

• Place of death is influential depending on the specific services offered.
• Underdeveloped services often lead to death in acute hospitals.
• Developed services, such as hospices, result in home or hospice deaths.

Equity of Access?

• Approximately 95% of care is for cancer patients.
• Non -cancer patients may also need palliate care.
• Non-cancer deaths, minority groups and specific populations (intellectual/physical disability, prisoners, intravenous drug users, children) require specific care, and often have poorer access.
• Education and respite care needs are relevant.

Palliative Principles in Hospitals

• 'Hospice-friendly hospitals' are those utilizing palliative care principles within their hospital settings. A team model is implemented for comprehensive care.
• Opportunities to improve community care also exist.

Describe Importance of Communication Regarding Diagnosis of Dying

Clinical Trajectory of Care of Dying Patients

• Illustrative diagram of clinical trajectory of care for dying patients.

Barriers to Diagnosing Dying

• Hope that the patient may get better
• Lack of definitive diagnosis
• Pursuing unrealistic/futile interventions
• Disagreement about patient condition
• Failure to recognize key symptoms
• Lack of knowledge regarding medication prescribing
• Poor communication with patients/families
• Concerns about treatment withdrawal/prolongation
• Fear of shortening life
• Concerns about resuscitation
• Cultural/spiritual barriers
• Medico-legal issues

When and How to Discuss 'Do Not Resuscitate' Orders with Patients.

• DNACPR discussion needs to be with the patient/proxy, unless desired.
• Clear wording/documentation is mandatory to avoid harm to patients/families..
• 'Colloquialisms' should be avoided.
• Doctors should probably discuss resuscitation with any patient at clear risk of cardiorespiratory arrest.
• DNACPR is often considered independently.

Diagnosing Dying: Effects on Patient and Family if Diagnosis Not Made

• Patient/family unawareness of impending death.
• Loss of trust in the medical team.
• Conflicting messages/diagnosis from different medical professionals.
• Undignified deaths due to uncontrolled symptoms/pain.
• Dissatisfaction among patient and family.
• Inappropriate CPR initiated at the end of life.
• unmet cultural/spiritual needs Formal patient/family complaints regarding care provisions.

Importance of Communication

• 20% of patients reported dissatisfaction with communication.

Serious Illness Conversation Guide

• Conversation guide for discussing serious illness.
• Steps involve setting the stage for conversation, assessing the patient's knowledge and understanding of the illness, sharing information, exploring goals and concerns, and concluding.

Bereavement, Grief, and Mourning

• Bereavement: the processes after death/loss, guiding adjustment.
• Grief: the subjective (emotional) response.
• Mourning: the expression of grief, influenced by culture

Normal Grief

• Feelings (sadness, anger, guilt, anxiety, loneliness, shock, helplessness, yearning, relief, numbness)
• Physical sensations (hollowness, tightness, noise sensitivity, breathlessness, weakness, lack of energy, dry mouth)
• Cognitive (disbelief, confusion, pre-occupation, sense of presence, hallucinations)
• Behaviours (sleep/appetite disturbances, absent-mindedness, social withdrawal, dreams of deceased, avoiding reminders, searching for deceased, sighing, overactivity, crying, carrying reminders, visiting reminders)
• Normal grief does not respond to antidepressants

Prolonged Grief Disorder: ICD-11

• Previously called complicated/pathological grief.
• A disturbance following the death of a loved one.
• Characterized by longing, persistent preoccupation with the deceased, and significant emotional distress.
• Duration exceeds normal grieving time frame (typically > 6 months).

Types of Complex/Prolonged Grief

• Delayed/absent grief: inability to grieve.
• Chronic grief: significant distress/pain lasting months/years
• Masked grief: grief masked by physical symptoms
• Exaggerated grief: intense and overwhelming grief

Risk Factors for Prolonged Grief

• Unexplained/unexpected death (murder/suicide)
• Mode of death (violent)
• Relationships with deceased (difficult/ambivalent, death un-satisfactorily experienced)
• Personal factors (low self-esteem, low trust, previous mental health concerns, family issues)

Expected Deaths?

• Euthanasia: the act of deliberately ending life to relieve suffering
• Physician-assisted suicide/Medical Assistance in Dying (MAID) involves assisting another person to die
• Withdrawing/withholding treatment is also a form of ending a life

Locations & Issues

• Locations where euthanasia is legal.
• Ethical and legal challenges regarding the medical practice of end-of-life choices (e.g., conflicts between ethics, law, regulations, competencies of staff, personal problems, and conflicts avoiding harm, multiple relationships, third-party requests...)

Mortality by Jurisdiction

• Statistical data presented by country regarding Medical Assistance in Dying (MAID) and mortality.

Mortality by Jurisdiction and Disease

• Statistical data regarding specific jurisdictions/death rates by disease category and other factors.

Conclusions

• Death is a taboo topic.
• Diagnosing/communicating dying is challenging.
• Hospital care during end of life is often poorly received.
• Palliative care is appreciated/has good feedback outcomes but access can be limited.
• Palliative care approach improvements can/should be implemented in hospital environments.
• Complex grief related to end-of-life processes is possible.
• Complex legal and ethical issues surrounding treatment choices are apparent.

Relevant Extra Reading

Supplementary: More Patient Stories

• Collection of patient stories related to palliative care.