The Patient Journey

Everyone has their own journey to death, some may gradually fail and for others death comes suddenly. In some people, the body weakens whilst the mind stays alert, and others remain physically strong, yet their mind weakens.

However the nature of end of life care is the reality that at some point death will come to the person, and each loss is felt by those that are close to the one who has died, even those who have cared for them. Families often described the journey as a roller coaster, an unpredictable up and down journey that suddenly comes to an abrupt end.

Points to consider

By the time a patient and their family are at the point of receiving palliative or end of life care:

  • There may have been long periods of stability and wellness before they begin to deteriorate
  • There may have been periods of active treatment with a real or perceived perception of cure
  • Most life-limiting conditions will have a serious impact on a patient’s functional capacity, quality of life, relationships, aspirations and plans
  • There may have been a slow and difficult decline and the family may be exhausted.

Key Transitions

Diagnosis of life-threatening illness

Loneliness

Uncertainty coming to terms, decisions and questions.

Treatment of symptoms

Relapse/deterioration

Quality of life

Find meaning of life, Integrity of identity, Hope, Legacy

Plans endings goodbyes

Care in the last few weeks

A good death

Preparing for end of life care requires numerous adjustments for both the person and their family. Cultural issues, disability and age can influence the process. You can help by recognising the losses that patients and families may face. Don’t forget, it is highly complex to diagnose dying, which leads to missed opportunities with families and risk of complicated grief.

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