Prolonged disorders of consciousness (PDoC): Challenges for hospice staff

Authors:

Prof Nikki Pease, Consultant Palliative Medicine, Velindre NHS Trust

Dr Siwan Seaman, Medical Director and Consultant, Marie Curie Hospice Cardiff and the Vale

Clare Elwell. Clare’s husband was in a Prolonged Disorder of Consciousness and received end-of-life care following a best interests decision to discontinue CANH

Prof Jenny Kitzinger, Professor of Communications Research, Coma & Disorders of Consciousness Research Centre, Cardiff University
e-mail KitzingerJ@cardiff.ac.uk
twitter (@Jenny Kitzinger);

Prolonged Disorders of Consciousness, short ‘PDoC’, include patients in a vegetative state (VS) and minimally conscious state (MCS). Although PDoC patients have sleep-wake cycles, they have no or minimal awareness. This condition is often due to a sudden catastrophic brain injury in a previously well person. No reliable UK figures on the number of people affected by PDoC exists. Estimates are that thousands of PDoC patients remain in long term care in the UK, and some survive in a PDoC for several years or even decades. A key question for their clinical teams (and their families) is whether it remains in the patient’s best interests to continue life-sustaining treatment, including clinically assisted nutrition and hydration [CANH]. Increasingly PDoC patients may be referred for hospice care.

The 2018 UK Supreme Court case ‘re Y’ ruled there was no longer a legal obligation to approach a court for endorsement of decisions with respect to discontinuing CANH for a PDoC patient; as long as robust decision-making procedures had been followed and there was agreement between medical opinion and those involved in patient’s welfare, i.e. family and / or close friends 1. The robust procedures to be followed are laid out in national guidance from the BMA and the RCP 2, 3 These Guidelines strive to support clinicians, families, and health service commissioners to understand their legal and ethical responsibilities. They also acknowledged that withdrawal of clinically assisted nutrition and hydration for PDoC patients has been relatively unusual and staff required support.

Until recently, many PDoC patients have received ongoing life-sustaining treatment by default. As a consequence PDoC patients requiring end of life care are rare compared to people dying with cancer or end organ failures. As such, many hospice staff will not have seen or cared for a PDoC patient.

Within this blog, we reflect on hospice staff experience of caring for PDoC patients and highlight a resource supporting training for healthcare professionals.

The ‘look’ of PDoC patients: The majority of patients who receive in-patient hospice care within the UK have signs of their progressive illness and often appear frail and cachectic.

Hospice Doctor “My first experience looking after a patient in a permanent vegetative state was a few months ago… I wasn’t prepared for it. Initially when she came in, she was dressed very well; she was in a motorised wheelchair with her family. And I just remember thinking that was very strange. She was coming in for end-of-life care and for withdrawal of artificial nutrition and hydration, but she’d come in her wheelchair. And the two things didn’t really fit…

The need for education can be clear from the first moment a PDoC patient enters a hospice, with staff feeling unprepared for what the patient looks like.

Patients’ responses and reflexes: PDoC patients not only open their eyes but may move and make sounds, retract from painful stimuli, turn their heads or close their fingers over an object or someone’s hand. For staff without training this can be unsettling and may make them question the diagnosis.

Hospice ward nurse “We knew the history of it had been a prolonged period for the patient and the family. But it seemed as though the patient was responding. […] it took me off guard.”

Family reactions: Although some family members may talk to their relative while they are dying, others may appear quite detached from the patient and talk to one another next to their relative’s bed as if their relative is not there. This dis-engagement can be an active affirmation that the person they knew and loved is no longer there, but can be disconcerting for staff who are perhaps, used to families being with their dying loved ones in a particular way.

Family expertise: Families have often built up years of experience and skills caring for their relative. They may know more about PDoC than the hospice staff as well as understanding more about this individual patient (e.g. knowing what triggers sweating or changes in breathing). It’s important to listen to family expertise, but not to make them ‘nurse’ the patient or have to monitor medication, when they want to be able to relinquish that role and be ‘just his wife’ or ‘completely his brother’ as they sit at the deathbed.

**Funding from the Marie Curie Research Impact Fund has supported a project allowing wider access (via free places) to a specifically designed PDoC end of life care course which helps staff engage with these issues. Feedback on the course to date shows that it helps staff to understand PDoC and support families, and increases their confidence in clinical management and support for one another. Ten free places are left on the online course – email kitzingerj@cardiff.ac.uk if you would like to participate in the initiative.**

Sepia drawing representing a person caring for someone in a wheelchair.

Image by Karin Andrews Jashapara

References:

  1. DyerC Life support can be removed without courts if doctors and families agree. July 2018 https://doi.org/10.1136/bmj.k3332 BMJ2018;362:k3332. [accessed April 2024]
  2. BMA/RCP Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent Guidance for decision-making in England and Wales https://www.bma.org.uk/media/1161/bma-clinically-assisted-nutrition-hydration-canh-full-guidance.pdf [accessed April 2024]
  3. Royal College of Physicians. Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines. 6 March 2020. www.rcplondon.ac.uk/guidelines-policy/prolonged-disorders-consciousness-national-clinical-guidelines. [accessed April 2024]

Declaration of interests

We have read and understood the BMJ Group policy on declaration of interests and declare the following interests: none.

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