End of life evidence - Age UK 2013

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Created:  2024-06-09

Fears Around Death (Source: NOT GIVEN)

• Pain of Dying (83%) - This is the most common fear.

• Dying Alone (67%) - Fear of isolation at the end of life.

• Being Told They Are Dying (62%) - Fear of the unknown and emotional impact.

• Dying in Hospital (59%) - Preference for a more familiar setting.

Note: Fears of financial hardship (bankruptcy - 41%), relationship loss (divorce - 39%), and job loss (38%) might be intertwined with end-of-life concerns but are not directly related to the dying process itself.

End-of-Life Care (Source: NICE guidance)

• Definition: For people with:

  • Advanced, progressive, incurable conditions

  • Likely death within 12 months

  • Life-threatening acute conditions

• Goal: Best quality of life for patients and families.

• Palliative Care: An active approach that includes:

  • Pain and symptom management

  • Psychological, social, and spiritual support

  • Helping patients live actively until death

  • Supporting families during illness and bereavement

Palliative care can also be provided earlier in an illness alongside other treatments.

End-of-Life Wishes (Source: Research)

Key Desires:

• Physical Comfort: Pain and symptoms effectively managed.

• Emotional & Spiritual Well-Being: Peace, acceptance, and connection to meaning.

• Sense of Self: Maintaining identity and personal dignity.

• Respectful Care: Honoring cultural, religious traditions, and wishes.

• Compassionate Support: Attentive and understanding medical staff.

• Peaceful Passing: Dying in a preferred location (e.g., home).

• Companionship: Not being alone at the end.

• Minimizing Burden: Avoiding feeling like a burden on loved ones.

• Autonomy: Choice in decision-making (varies by individual).

• Acceptance of Death: Some may welcome death as a natural process.

Note:

• The desire for control over decisions can vary.

• Some may want complete control, while others may prefer to delegate to loved ones.

Dying at Home: Considering the Nuances

The Ideal:

• Surveys suggest a strong desire to die at home (around 66%).

• This aligns with the Department of Health's End of Life Strategy (2008) promoting home death.

• Home is seen as familiar, comforting, and allows for being surrounded by loved ones.

The Reality: A More Complex Picture

• Surveys may not capture the full picture.

  • Many respondents were middle-aged, healthy individuals.

• Preference for home death decreases with age:

  • 75% for those aged 25-34 drops to 45% for those aged 75+.

• Support is crucial:

  • 60% who initially wanted home death changed their view if support was lacking.

• Reasons for wanting home death may not fully translate to reality:

  • People might prioritize comfort over optimal pain control available in hospitals.

Challenges of Home Death for Older Adults:

• Increased likelihood of living alone or with a frail spouse.

• Fear of being a burden on family, especially for personal care needs.

• Logistical difficulties:

  • Accessing adequate medical and social services.

  • Adapting the home for end-of-life care.

  • Potential negative impact on bereaved family's feelings about the home.

• Limited space and potential disrepair in older homes can create additional challenges.

The romanticized idea of dying at home may not always reflect the complexities faced by older adults. It's important to consider individual circumstances, support networks, and realistic expectations when making end-of-life decisions.

Case: Ms. Evelyn Wright - Advanced Care Planning

Patient: Ms. Evelyn Wright, 78 years old

Diagnosis: Metastatic pancreatic cancer (diagnosed 18 months ago)

Current Status: Ms. Wright has undergone chemotherapy and radiation treatment, but the cancer has progressed. She experiences significant pain, fatigue, and nausea. She has been hospitalized twice in the past 3 months for pain management and complications. Recent scans show continued tumor growth, and her oncologist has determined further curative treatment is not an option.

Family: Ms. Wright is widowed and has two adult children, a son (Michael) who lives locally and a daughter (Sarah) who lives out of state. Both children are very involved in her care.

Advance Care Planning Discussion:

The healthcare team has identified Ms. Wright as appropriate for an advanced care planning discussion. You, a medical student rotating on the oncology service, are tasked with initiating this conversation.

Key Points to Address:

• Understanding of Prognosis: Explain Ms. Wright's current medical condition and limited treatment options. Use clear but compassionate language and avoid medical jargon.

• Goals of Care: Ask Ms. Wright about her goals for care. Does she prioritize comfort measures? Is there anything specific she hopes to achieve in the remaining time?

• Treatment Preferences: Discuss Ms. Wright's wishes regarding future treatment decisions. Would she prefer to continue aggressive pain management even if it comes with potential side effects? Is she open to hospice care focused on comfort at the end of life?

• Place of Death: This is a sensitive topic, but it's important to understand Ms. Wright's preferences. Would she prefer to be at home surrounded by family, or does she feel more comfortable receiving care in a hospital setting?

Possible Responses and Considerations:

• Place of Death: Ms. Wright might express a strong desire to be at home, especially if she has a good support system from her children. However, explore her concerns about pain management, burdening her family, and the ability to manage her needs at home. If home death is the preferred option, discuss the logistics of enlisting hospice care services to provide support.

• Treatment Preferences: Ms. Wright might prioritize comfort and may be open to hospice care focused on pain management and emotional support. However, she might also have specific wishes regarding certain treatments, like continuing pain medication even if it affects her mental alertness.

Documentation and Follow-up:

Document Ms. Wright's wishes in her medical record and ensure her family is aware of the decisions made. The healthcare team, including the social worker and hospice care team (if applicable), will work collaboratively to ensure her care aligns with her preferences.

Learning Points:

This case highlights the importance of advanced care planning for terminally ill patients. By initiating these discussions early and with sensitivity, healthcare professionals can ensure patients have a voice in their end-of-life care and that their wishes are respected.