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Questions and Answers
Which of the following reasons is cited as a factor contributing to the preference for home death despite the reality that a minority die at home?
Which of the following reasons is cited as a factor contributing to the preference for home death despite the reality that a minority die at home?
According to the provided text, why do patients prefer hospice care over hospital care?
According to the provided text, why do patients prefer hospice care over hospital care?
What is a major concern regarding symptom control in hospital care for dying patients?
What is a major concern regarding symptom control in hospital care for dying patients?
What are some of the common complaints regarding communication from hospital staff during end-of-life care?
What are some of the common complaints regarding communication from hospital staff during end-of-life care?
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What is the primary goal of palliative care?
What is the primary goal of palliative care?
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According to the World Health Organisation, what is palliative care?
According to the World Health Organisation, what is palliative care?
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Which of the following is NOT a component of palliative care?
Which of the following is NOT a component of palliative care?
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What is the role of a consultant physician in palliative medicine?
What is the role of a consultant physician in palliative medicine?
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What is a significant barrier to diagnosing and communicating dying, according to the text?
What is a significant barrier to diagnosing and communicating dying, according to the text?
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Which of these factors contributes to the dissatisfaction with hospital-based deaths?
Which of these factors contributes to the dissatisfaction with hospital-based deaths?
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What is a potential benefit of integrating palliative care principles into hospital care?
What is a potential benefit of integrating palliative care principles into hospital care?
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Which of the following is NOT a factor contributing to dissatisfaction associated with the experience of death?
Which of the following is NOT a factor contributing to dissatisfaction associated with the experience of death?
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Why is access to palliative care considered limited?
Why is access to palliative care considered limited?
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What should be discussed with patients before initiating a 'Do Not Resuscitate' (DNACPR) order?
What should be discussed with patients before initiating a 'Do Not Resuscitate' (DNACPR) order?
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What is the primary reason why a 'Do Not Resuscitate' (DNACPR) order should be discussed with patients unless they explicitly refuse?
What is the primary reason why a 'Do Not Resuscitate' (DNACPR) order should be discussed with patients unless they explicitly refuse?
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Which of the following is NOT a potential consequence of failing to diagnose a patient's dying process?
Which of the following is NOT a potential consequence of failing to diagnose a patient's dying process?
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What is the primary aim of the 'Serious Illness Conversation Guide'?
What is the primary aim of the 'Serious Illness Conversation Guide'?
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In the context of the grieving process, which of the following is NOT an example of typical grief responses?
In the context of the grieving process, which of the following is NOT an example of typical grief responses?
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Which type of grief is characterized by delaying or avoiding the mourning process, sometimes triggered by a subsequent loss?
Which type of grief is characterized by delaying or avoiding the mourning process, sometimes triggered by a subsequent loss?
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Which of these is NOT a risk factor for developing Prolonged Grief Disorder?
Which of these is NOT a risk factor for developing Prolonged Grief Disorder?
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What is the primary difference between mourning and grief?
What is the primary difference between mourning and grief?
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Which of the following is NOT a potential symptom of normal grief?
Which of the following is NOT a potential symptom of normal grief?
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Which of the following statement is TRUE about the concept of 'good death'?
Which of the following statement is TRUE about the concept of 'good death'?
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In the context of the given content, what is the recommended approach to discussing DNACPR orders with patients?
In the context of the given content, what is the recommended approach to discussing DNACPR orders with patients?
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What is the recommended format for documenting DNACPR discussions?
What is the recommended format for documenting DNACPR discussions?
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Which of these is NOT a key component of the Serious Illness Conversation Guide?
Which of these is NOT a key component of the Serious Illness Conversation Guide?
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In the context of grief, what is the typical reaction to antidepressants?
In the context of grief, what is the typical reaction to antidepressants?
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What is the main purpose of the ICD-11 diagnostic criteria for Prolonged Grief Disorder?
What is the main purpose of the ICD-11 diagnostic criteria for Prolonged Grief Disorder?
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In the context of end-of-life care, why is open communication essential for respecting individual needs and preferences?
In the context of end-of-life care, why is open communication essential for respecting individual needs and preferences?
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What is the primary goal of Hospice care?
What is the primary goal of Hospice care?
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Which of the following is NOT a characteristic of Hospice care?
Which of the following is NOT a characteristic of Hospice care?
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According to the provided content, which of the following is a significant factor contributing to the growing need for palliative care?
According to the provided content, which of the following is a significant factor contributing to the growing need for palliative care?
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How does Hospice care relate to euthanasia and physician-assisted suicide?
How does Hospice care relate to euthanasia and physician-assisted suicide?
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What does the provided content suggest about the accessibility of palliative care?
What does the provided content suggest about the accessibility of palliative care?
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What percentage of people in Ireland believe we do not speak about death enough?
What percentage of people in Ireland believe we do not speak about death enough?
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Which of these religions has a ritual that clashes with hospital policy when it comes to the handling of a deceased body?
Which of these religions has a ritual that clashes with hospital policy when it comes to the handling of a deceased body?
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What percentage of Irish people prefer to die at home?
What percentage of Irish people prefer to die at home?
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According to the content, what is the main reason for improved communication regarding death and dying before and after the pandemic?
According to the content, what is the main reason for improved communication regarding death and dying before and after the pandemic?
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What percentage of Irish people prefer to die at home even in their final days?
What percentage of Irish people prefer to die at home even in their final days?
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What is NOT mentioned as a cultural variation in attitudes to death?
What is NOT mentioned as a cultural variation in attitudes to death?
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Which of these is NOT a barrier to diagnosing dying as discussed in the content?
Which of these is NOT a barrier to diagnosing dying as discussed in the content?
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What is the main focus of the quote by Montaigne in relation to death and dying?
What is the main focus of the quote by Montaigne in relation to death and dying?
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Which of the following factors is NOT specifically listed as a personal factor that may contribute to complicated grief?
Which of the following factors is NOT specifically listed as a personal factor that may contribute to complicated grief?
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What are the two main categories of medically-assisted death as described in the text?
What are the two main categories of medically-assisted death as described in the text?
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Which of the following is NOT a legal location for Medical Assistance in Dying or Euthanasia, according to the provided information?
Which of the following is NOT a legal location for Medical Assistance in Dying or Euthanasia, according to the provided information?
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What specific type of attachment to the deceased is mentioned in the text as a potential contributor to complicated grief?
What specific type of attachment to the deceased is mentioned in the text as a potential contributor to complicated grief?
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Which of the following is NOT listed in the text as an ethical or legal issue related to medical assistance in dying?
Which of the following is NOT listed in the text as an ethical or legal issue related to medical assistance in dying?
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What is a possible connection between insecure attachment in childhood and complicated grief?
What is a possible connection between insecure attachment in childhood and complicated grief?
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Which of the following is an accurate description of 'Death by Omission' as defined in the text?
Which of the following is an accurate description of 'Death by Omission' as defined in the text?
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Which of the following is the most accurate summary of how the text portrays the relationship between complicated grief and attachment styles?
Which of the following is the most accurate summary of how the text portrays the relationship between complicated grief and attachment styles?
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Flashcards
Palliative Care
Palliative Care
A specialized approach to improve quality of life for patients with serious illnesses.
Barriers to Diagnosing Dying
Barriers to Diagnosing Dying
Obstacles that hinder timely recognition of approaching death.
Inequities of Access
Inequities of Access
Disparities in availability of palliative care services among different populations.
Communication in Dying
Communication in Dying
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Grief vs Mourning
Grief vs Mourning
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Attitudes to Death in Ireland
Attitudes to Death in Ireland
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Cultural Variations in Grieving
Cultural Variations in Grieving
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Legal Issues in Euthanasia
Legal Issues in Euthanasia
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Hospice Care
Hospice Care
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Team Approach in Hospice
Team Approach in Hospice
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Importance of Hospice
Importance of Hospice
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Access to Palliative Care
Access to Palliative Care
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Satisfaction with Hospital Deaths
Satisfaction with Hospital Deaths
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Palliative Care Access
Palliative Care Access
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Dying Communication Barriers
Dying Communication Barriers
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Principles of Palliative Care in Hospitals
Principles of Palliative Care in Hospitals
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Prolonged Grief Experience
Prolonged Grief Experience
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Mode of Death
Mode of Death
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Ambivalent Attachment
Ambivalent Attachment
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Dependent Attachment
Dependent Attachment
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Euthanasia
Euthanasia
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Physician-assisted Suicide
Physician-assisted Suicide
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Death by Omission
Death by Omission
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Factors Leading to Suicide
Factors Leading to Suicide
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Informed Consent
Informed Consent
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Do Not Resuscitate Order
Do Not Resuscitate Order
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Diagnosing Dying
Diagnosing Dying
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Importance of Communication
Importance of Communication
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Serious Illness Conversation Guide
Serious Illness Conversation Guide
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Bereavement
Bereavement
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Grief
Grief
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Mourning
Mourning
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Normal Grief
Normal Grief
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Prolonged Grief Disorder
Prolonged Grief Disorder
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Risk Factors for Prolonged Grief
Risk Factors for Prolonged Grief
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Chronic Grief
Chronic Grief
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Delayed Grief
Delayed Grief
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Masked Grief
Masked Grief
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Exaggerated Grief
Exaggerated Grief
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Cultural Needs in Grief
Cultural Needs in Grief
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Home Death Preference
Home Death Preference
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Hospice vs. Hospital Care
Hospice vs. Hospital Care
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Patient Complaints in Hospitals
Patient Complaints in Hospitals
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Symptom Control in Palliative Care
Symptom Control in Palliative Care
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Patient and Family Needs
Patient and Family Needs
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Final Year of Life Care
Final Year of Life Care
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Study Notes
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.
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Description
This quiz explores key concepts related to palliative care, examining patient preferences for home versus hospital death and the importance of effective communication during end-of-life care. Test your knowledge on the role of palliative care, its goals, and challenges faced in hospital settings.