Palliative Care Insights and Preferences
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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?

  • Desire for a more intimate environment.
  • Financial constraints related to hospital care.
  • Inadequate community support. (correct)
  • Preference for a more spiritual experience.
  • According to the provided text, why do patients prefer hospice care over hospital care?

  • Hospice care is less expensive.
  • Hospital care focuses more on cure than comfort. (correct)
  • Hospice care is always free.
  • Hospice care provides more personalized attention. (correct)
  • What is a major concern regarding symptom control in hospital care for dying patients?

  • Lack of access to pain medication.
  • Failure to adequately monitor vital signs.
  • Insufficient attention to the psychosocial needs of the patient. (correct)
  • Unwillingness of medical staff to administer necessary medications.
  • What are some of the common complaints regarding communication from hospital staff during end-of-life care?

    <p>All of the above. (D)</p> Signup and view all the answers

    What is the primary goal of palliative care?

    <p>To achieve the highest possible quality of life for both the patient and their family. (A)</p> Signup and view all the answers

    According to the World Health Organisation, what is palliative care?

    <p>Care for patients with chronic illnesses who are no longer responding to curative treatment. (D)</p> Signup and view all the answers

    Which of the following is NOT a component of palliative care?

    <p>Financial support. (C)</p> Signup and view all the answers

    What is the role of a consultant physician in palliative medicine?

    <p>To lead an interdisciplinary team in providing palliative care. (D)</p> Signup and view all the answers

    What is a significant barrier to diagnosing and communicating dying, according to the text?

    <p>Lack of open communication about death (D)</p> Signup and view all the answers

    Which of these factors contributes to the dissatisfaction with hospital-based deaths?

    <p>Inadequate symptom control and communication (A)</p> Signup and view all the answers

    What is a potential benefit of integrating palliative care principles into hospital care?

    <p>Improved patient and family satisfaction with care (B)</p> Signup and view all the answers

    Which of the following is NOT a factor contributing to dissatisfaction associated with the experience of death?

    <p>Limited access to spiritual guidance (A)</p> Signup and view all the answers

    Why is access to palliative care considered limited?

    <p>Insufficient funding for palliative care services (D)</p> Signup and view all the answers

    What should be discussed with patients before initiating a 'Do Not Resuscitate' (DNACPR) order?

    <p>All of the above (D)</p> Signup and view all the answers

    What is the primary reason why a 'Do Not Resuscitate' (DNACPR) order should be discussed with patients unless they explicitly refuse?

    <p>To support patients in understanding their illness trajectory and making informed choices. (D)</p> Signup and view all the answers

    Which of the following is NOT a potential consequence of failing to diagnose a patient's dying process?

    <p>Patients may be more likely to receive CPR despite their wishes, potentially extending suffering. (C)</p> Signup and view all the answers

    What is the primary aim of the 'Serious Illness Conversation Guide'?

    <p>To facilitate open and honest communication between patients and their healthcare providers about terminal illness and end-of-life care. (D)</p> Signup and view all the answers

    In the context of the grieving process, which of the following is NOT an example of typical grief responses?

    <p>Persistent preoccupation with the deceased for several years, accompanied by intense emotional pain. (D)</p> Signup and view all the answers

    Which type of grief is characterized by delaying or avoiding the mourning process, sometimes triggered by a subsequent loss?

    <p>Delayed grief (A)</p> Signup and view all the answers

    Which of these is NOT a risk factor for developing Prolonged Grief Disorder?

    <p>Rapid recovery from the initial bereavement period (C)</p> Signup and view all the answers

    What is the primary difference between mourning and grief?

    <p>Grief is a universal response, while mourning is influenced by cultural norms. (A)</p> Signup and view all the answers

    Which of the following is NOT a potential symptom of normal grief?

    <p>Hallucinations and feeling the presence of the deceased. (D)</p> Signup and view all the answers

    Which of the following statement is TRUE about the concept of 'good death'?

    <p>It focuses on ensuring that individuals can die with dignity, comfort, and surrounded by loved ones. (C)</p> Signup and view all the answers

    In the context of the given content, what is the recommended approach to discussing DNACPR orders with patients?

    <p>Always discuss DNACPR orders with patients, unless there is a clear risk of harm. (A)</p> Signup and view all the answers

    What is the recommended format for documenting DNACPR discussions?

    <p>Clear and concise language, avoiding jargon and ensuring accurate documentation. (D)</p> Signup and view all the answers

    Which of these is NOT a key component of the Serious Illness Conversation Guide?

    <p>Summarizing the patient's prognosis and informing them about their remaining life expectancy. (D)</p> Signup and view all the answers

    In the context of grief, what is the typical reaction to antidepressants?

    <p>Normal grief is relatively unresponsive to antidepressants. (C)</p> Signup and view all the answers

    What is the main purpose of the ICD-11 diagnostic criteria for Prolonged Grief Disorder?

    <p>To help clinicians identify and distinguish prolonged grief disorder from other mental health conditions. (B)</p> Signup and view all the answers

    In the context of end-of-life care, why is open communication essential for respecting individual needs and preferences?

    <p>All of the above (D)</p> Signup and view all the answers

    What is the primary goal of Hospice care?

    <p>To enhance quality of life and provide comfort during the terminal phase (B)</p> Signup and view all the answers

    Which of the following is NOT a characteristic of Hospice care?

    <p>Prolonging life as much as possible using all medical interventions (C)</p> Signup and view all the answers

    According to the provided content, which of the following is a significant factor contributing to the growing need for palliative care?

    <p>The aging population and advances in life-prolonging treatments (A)</p> Signup and view all the answers

    How does Hospice care relate to euthanasia and physician-assisted suicide?

    <p>Hospice care is distinct from euthanasia and physician-assisted suicide, which aim to end life. (C)</p> Signup and view all the answers

    What does the provided content suggest about the accessibility of palliative care?

    <p>There are significant disparities in access to palliative care, creating inequities. (B)</p> Signup and view all the answers

    What percentage of people in Ireland believe we do not speak about death enough?

    <p>57% (A)</p> Signup and view all the answers

    Which of these religions has a ritual that clashes with hospital policy when it comes to the handling of a deceased body?

    <p>American Indians (B)</p> Signup and view all the answers

    What percentage of Irish people prefer to die at home?

    <p>74% (D)</p> Signup and view all the answers

    According to the content, what is the main reason for improved communication regarding death and dying before and after the pandemic?

    <p>The pandemic encouraged people to think about their own mortality. (C)</p> Signup and view all the answers

    What percentage of Irish people prefer to die at home even in their final days?

    <p>63% (A)</p> Signup and view all the answers

    What is NOT mentioned as a cultural variation in attitudes to death?

    <p>Burial practices and cemetery traditions (A)</p> Signup and view all the answers

    Which of these is NOT a barrier to diagnosing dying as discussed in the content?

    <p>Lack of clear guidelines in the medical profession around end-of-life diagnosis. (C)</p> Signup and view all the answers

    What is the main focus of the quote by Montaigne in relation to death and dying?

    <p>The necessity of preparing for death throughout life (A)</p> Signup and view all the answers

    Which of the following factors is NOT specifically listed as a personal factor that may contribute to complicated grief?

    <p>Difficulty accepting the reality of the death (D)</p> Signup and view all the answers

    What are the two main categories of medically-assisted death as described in the text?

    <p>Euthanasia and Physician-assisted suicide (B)</p> Signup and view all the answers

    Which of the following is NOT a legal location for Medical Assistance in Dying or Euthanasia, according to the provided information?

    <p>United Kingdom (B)</p> Signup and view all the answers

    What specific type of attachment to the deceased is mentioned in the text as a potential contributor to complicated grief?

    <p>Dependent or interdependent attachment (D)</p> Signup and view all the answers

    Which of the following is NOT listed in the text as an ethical or legal issue related to medical assistance in dying?

    <p>Conflicts Between Patients and Families (A)</p> Signup and view all the answers

    What is a possible connection between insecure attachment in childhood and complicated grief?

    <p>Insecure attachment in childhood can contribute to complicated grief, particularly if the relationship with the deceased involved dependence or interdependence. (B)</p> Signup and view all the answers

    Which of the following is an accurate description of 'Death by Omission' as defined in the text?

    <p>Withholding or withdrawing treatment that may prolong life (B)</p> Signup and view all the answers

    Which of the following is the most accurate summary of how the text portrays the relationship between complicated grief and attachment styles?

    <p>The text suggests a relationship between insecure attachment, especially dependent or interdependent attachments, and complicated grief. However, it does not imply a direct cause-and-effect relationship. (D)</p> Signup and view all the answers

    Flashcards

    Palliative Care

    A specialized approach to improve quality of life for patients with serious illnesses.

    Barriers to Diagnosing Dying

    Obstacles that hinder timely recognition of approaching death.

    Inequities of Access

    Disparities in availability of palliative care services among different populations.

    Communication in Dying

    Essential discussions about diagnosis and end-of-life decisions.

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    Grief vs Mourning

    Grief is the emotional response; mourning is the outward expression.

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    Attitudes to Death in Ireland

    Public perspectives on death and dying, showing reluctance to discuss it.

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    Cultural Variations in Grieving

    Different practices and beliefs around death across cultures.

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    Legal Issues in Euthanasia

    Debates surrounding the legality and ethics of assisted dying.

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    Hospice Care

    Care offered to patients at an advanced disease stage, focusing on comfort rather than curative treatment.

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    Team Approach in Hospice

    Utilizes a multidisciplinary team to support patient and family needs during illness and bereavement.

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    Importance of Hospice

    Enhances quality of life for patients, potentially impacting illness progression positively.

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    Access to Palliative Care

    There are disparities in access to palliative care for cancer and non-cancer patients.

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    Satisfaction with Hospital Deaths

    Low levels of satisfaction reported by families regarding hospital deaths due to communication and emotional support issues.

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    Palliative Care Access

    Limited availability of palliative care services affects patient support during dying.

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    Dying Communication Barriers

    Significant obstacles exist that impede discussions about dying and death in healthcare settings.

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    Principles of Palliative Care in Hospitals

    Integrating palliative care principles into hospital settings can improve dying experiences for patients and families.

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    Prolonged Grief Experience

    The experience of death can lead to complex and prolonged grieving, causing dissatisfaction.

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    Mode of Death

    A classification of how a person dies, such as violent or natural.

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    Ambivalent Attachment

    A relationship characterized by mixed feelings of affection and resentment.

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    Dependent Attachment

    A relationship where one person relies heavily on the other for emotional support.

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    Euthanasia

    The act of deliberately ending a person's life to relieve suffering.

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    Physician-assisted Suicide

    Deliberate assistance from a doctor for a person to end their own life.

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    Death by Omission

    The practice of withdrawing or withholding treatment that could prolong life.

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    Factors Leading to Suicide

    Personal characteristics that increase risk, like low self-esteem and previous psychiatric issues.

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    Informed Consent

    A process by which a patient agrees to treatment with full understanding of risks.

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    Do Not Resuscitate Order

    A directive indicating that no resuscitation should occur in case of cardiac arrest.

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    Diagnosing Dying

    Recognizing when a patient may be close to death, important for care planning.

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    Importance of Communication

    Essential for discussing end-of-life care preferences and options with patients.

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    Serious Illness Conversation Guide

    A structured approach for discussing prognosis and care goals with patients.

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    Bereavement

    The process of adjusting to the loss of a loved one.

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    Grief

    The emotional response and feelings experienced after a loss.

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    Mourning

    The cultural expression of grief and loss.

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    Normal Grief

    Common emotional and physical responses following a death, such as sadness and disbelief.

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    Prolonged Grief Disorder

    Persistent and intense grief lasting more than six months, causing impairment.

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    Risk Factors for Prolonged Grief

    Circumstances that may increase the likelihood of prolonged grieving.

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    Chronic Grief

    Persistent pain and grief following a loss, lasting for long periods.

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    Delayed Grief

    Grief that is postponed, potentially triggered by another loss.

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    Masked Grief

    Grief that's hidden behind physical or unrelated symptoms.

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    Exaggerated Grief

    Intense and excessive grief that may lead to mental illness.

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    Cultural Needs in Grief

    Addressing unique cultural and spiritual requirements during bereavement.

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    Home Death Preference

    Many prefer to die at home, yet few achieve this.

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    Hospice vs. Hospital Care

    Studies show hospice care preferred for lower pain and better communication.

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    Patient Complaints in Hospitals

    Over half of complaints to NHS relate to care at death.

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    Symptom Control in Palliative Care

    Inadequate symptom control leads to poor quality of care at end of life.

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    Patient and Family Needs

    Palliative care addresses physical, psychological, and spiritual needs.

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    Final Year of Life Care

    Most patients prefer to die at home but are admitted to hospitals.

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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
    • 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.

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