Karen, aged 62, was diagnosed with motor neurone disease 12 months ago. She lives with her husband and grown up daughter and uses a wheelchair to mobilise in her home. Her overall level of function is diminishing. She tires easily, struggles with oral intake and suffers repeated respiratory tract infections. Recently, she is becoming increasingly dysarthric and appears more withdrawn and displays low mood.
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1. Explain the benefit of initiating a conversation about end-of-life care now?
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Correct answer:
Karen’s level of function has deteriorated, but she may live for many months or even longer. Of particular concern now, however, is the fact that her capacity to speak is deteriorating. This means that Karen’s ability to articulate her wishes regarding future care may soon pass. Advance care planning discussions will allow her to explore her own values and attitudes regarding care options and to state her wishes regarding future care.
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2.Who has responsibility for making decisions regarding Karen’s care?
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Correct answer:
Since Karen has full mental capacity, she is capable of making her own healthcare decisions. She is currently still able to communicate with others, but this may not be the case for long more. Her healthcare team have a responsibility, therefore, to offer Karen opportunities to discuss her condition, to seek answers to any questions or concerns that arise for her and to assist her in expressing her preferences regarding future care options. Advance care planning discussions will allow Karen to exercise her autonomy in relation to end-of-life decisions before her advancing disease limits this possibility.
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3. What treatment decisions should be the focus of advance care planning discussion with Karen?
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Correct answer:
In helping Karen to plan her future care, it is important not to overburden her with too many decisions at once. The following topics can be gently introduced to her over time, using a sensitive, patient approach that will
allow Karen to work through these issues at her own pace:
- Place of care
- Alternative methods of communication when speech is no longer possible
- Artificial nutrition and hydration
- Non-invasive ventilation
- Cardiopulmonary resuscitation
- Management of repeated infections
Following advance care planning discussions, Karen requested that she be cared for at home without artificial feeding or non-invasive ventilation. Four months later, she cannot speak at all, and her breathing is increasingly laboured. She is unable to leave the bed now and during her most recent assessment, she can no longer tolerate any oral intake.
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4. Is a diagnosis of dying appropriate at this stage?
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Correct answer:
Karen can no longer take any food or drink and does not want artificial nutrition or hydration. There is no possibility of reversing her advancing disease and her overall level of function is severely diminished. It is likely that without food and fluids she will die in the next 2 weeks, so a diagnosis of dying is appropriate.
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5. What goals of care are now suitable for Karen?
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Correct answer:
Karen has made known her wishes in relation to invasive interventions that may prolong her life. Those caring for her are obliged to act in her best interest and to honour her wishes. The following goals of care should be considered:
- Maximise Karen’s comfort through the alleviation of symptoms
- Discontinue interventions which may be inappropriate or potentially burdensome to Karen.
- Ensure that all decisions regarding her care reflect her wishes.
- Offer Karen and her family support with open communicate.
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6. What issues regarding Karen’s care need to be addressed with her family?
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Correct answer:
Karen’s family have cared for her at home through her long illness. In supporting them through this final phase, meaningful and sensitive discussions with the family should include the following
- Establish the family’s understanding and expectations regarding Karen’s condition.
- Provide the family with a medical update to help them understand why Karen is likely to die soon.
- Explain that the goals of care are aimed at maximising Karen’s comfort and are in keeping with her wishes.
- Any family concerns about treatment options/interventions are discussed and explanations offered.
- The changes that are likely to occur as death approaches are explained to the family; for example, explanations regarding noisy breathing (death rattle) or diminished consciousness.
