Prolonged disorders of consciousness: Practice described by palliative and rehabilitation physicians

Highlights

• •63.5% of survey respondents cared for people with prolonged disorders of consciousness at the end of their lives.
• •44% of clinicians withdraw clinically assisted nutrition and hydration (CANH) in the patient’s usual place of care.
• •Where a decision to admit is taken, 43% will admit to a hospice inpatient unit.
• •87% of survey respondents do not arrange long line or central intravenous access prior to withdrawal of CANH.
• •In 81% of cases, there was no difficulty with symptom management.

Abstract

Study objective

National clinical guidelines for the management of prolonged disorders of consciousness (PDOC) following sudden-onset brain injury were updated in 2020. Since then, clinical experience has grown. This paper reports on current practice.

Study design

A questionnaire was developed, tested and sent to rehabilitation and palliative medicine specialists, via the British Society of Physical and Rehabilitation Medicine and Association for Palliative Medicine. Anonymised responses were analysed.

Results

63.5% (n = 61) of respondents were involved in the care of people with PDOC, with two-thirds working in palliative medicine. 44% of clinicians withdraw clinically assisted nutrition and hydration (CANH) in the patient’s usual place of care. Where a decision to admit is taken, 43% will admit to a hospice inpatient unit. 87% of respondents do not arrange long line or central intravenous access prior to withdrawal of CANH.

Ninety-five per cent of clinicians prescribe opioids and 92% prescribe sedatives for prn use or directly convert regular medications to a continuous subcutaneous infusion when withdrawing CANH. Most clinicians titrate according to need. In 81% of cases, there was no difficulty with symptom management on withdrawal of CANH.

Forty-eight per cent of respondents worked with staff who expressed a conscientious objection to CANH, 40% in palliative medicine.

Conclusion

National guidance should be updated to reflect clinical practice with regard to place of care, the effectiveness of a subcutaneous route and the use of proportionate symptom management.

Graphical abstract

Introduction

Traumatic brain injury may lead to prolonged disorders of consciousness (PDOC), impaired awareness lasting more than 4 weeks following injury. PDOC may be subdivided into vegetative state (VS), wakefulness without awareness, or minimally conscious state (MCS), wakefulness with minimal awareness.^1,2

The UK Supreme Court (2018 Re Y) ruled that there is no legal obligation to bring decisions regarding withdrawal of clinically assisted nutrition and hydration (CANH) to court where there is agreement of medical opinion and agreement about the proposed course of action among those with an interest in the patient’s welfare.³ Following the judgement, palliative physicians became increasingly involved in delivering care to patients with PDOC in hospital, community and hospice settings.

There has been a general sense that the 2018 UK ruling reflects a more streamlined, compassionate and patient-centred approach, reducing unnecessary legal delays while still ensuring that decisions are made carefully and collaboratively.

The 2020 Royal College of Physicians (RCP) national clinical guidelines¹ included brief consensus suggestions for the practical management of care at the end of life for patients with PDOC where there had been a best interests decision-making process to withdraw CANH. The guidelines recommend that the practical management of end-of-life care include intravenous medication, doses of medication as per protocol that may be rapidly escalated to induce a ‘calm coma’ and inpatient specialist care. The guidelines are due for review in 2025.

There is little published, Turner-Stokes et al. reported practice in 2022.⁴ This 8-year cohort study reported 39 patients in whom CANH was withdrawn. The team followed the RCP guidelines, Professor Turner-Stokes having worked as lead author in the 2013 and 2020 guidance.

The aim of this paper is to describe practice among neurorehabilitation and palliative medical colleagues when providing care at the end of life following withdrawal of CANH. The authors hope that evidence from practice may inform the revision.

Methods

A questionnaire was developed by the authors, tested with colleagues and circulated to rehabilitation and palliative medicine specialists, via British Society of Physical and Rehabilitation Medicine and the Association for Palliative Medicine. Participation was voluntary, ethical approval was not necessary. Feedback was anonymous. Data and results were stored securely on an NHS server.

Results

Ninety-seven physicians responded, 63% (n = 61) of whom were involved in the care of patients with PDOC (pwPDOC). Results from the physicians with experience of caring for patients with PDOC are presented in this paper.

Characteristics of respondents involved in the care of pwPDOC

Sixty-five per cent (n = 40) of respondents involved in the care of pwPDOC worked in palliative medicine, 35% (n = 21) in rehabilitation medicine. 84% worked in England, 11% in Wales, 3% in the Republic of Ireland, 2% in Scotland.

On average, 46% of physicians saw 1 pwPDOC annually, 23% saw 10 or more. Rehabilitation physicians were more likely to see larger numbers (Table 1).

Table 1.

Respondents reported experience in caring for pwPDOC.

	Palliative medicine	Rehabilitation medicine
Number of pwPDOC in past 5 years
1–4	49% (n = 30)	6.5% (n = 4)
5–10	13% (n = 8)	8% (n = 5)
>10	3% (n = 2)	19.5% (n = 12)

Characteristics of patients with PDOC

Patients were reviewed by respondents in acute hospitals (28%), nursing or residential homes (24%), rehabilitation units (19%), hospice inpatient units (14%), patient’s home (11%) or community hospitals (4%).

Referrals to respondents were instigated by: a secondary care consultant (49%), GP(17%), care home manager (13%), patient’s family (6%), continuing care/social worker (5%), ethics committee (3%), district nurse (1%) and others (6%). Reasons for referral are listed in Table 2.

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Table 2.

Reasons for referral.

	Total n = 200	Rehabilitation medicine	Palliative medicine
Support to withdraw CANH	24%	6.5%	17.5%
Symptom management	23%	8.5%	14.5%
Advance care planning	19%	6.5%	12%
Second clinical opinion	13%	7.5%	5.5%
Ongoing care delivery	11.5%	4%	7.5%
Admission to rehabilitation unit	7%	6.5%	0.5%
Annual review	2%	1.5%	0.5%
Other (spasticity management, family care, discontinue haemodialysis)	0.5%	–	–

Respondents were allowed to select multiple reasons for referral.

Leading up to withdrawal of CANH

Respondents reported that CANH was withdrawn in pwPDOC over a range of time following brain injury; less than 3 months in 20%, 12 months or longer after injury in 30%. Rehabilitation physicians reported the proportion of patients having a palliative care opinion before withdrawal of CANH as; all = 53%, <25% = 18%. Palliative medicine physicians reported the proportion of patients having a rehabilitation opinion before withdrawal of CANH; all = 61%, <25 = 15%.

Physicians reported that the majority of patients had a formal capacity assessment (88%), formal best interests meeting (95%), a minority had an opinion from a Clinical Ethics committee (18%). Five per cent of respondents reported a personal conscientious objection to withdrawal of CANH.

Clinical management of the withdrawal of CANH

Eighty-seven per cent of respondents did not arrange long-term intravenous access prior to withdrawal of CANH (suggested in 2020 guidance). Reasons cited included experience in using subcutaneous medication, difficulty arranging access and the limiting influence of intravenous infusions on place of care.

Ninety-five per cent of clinicians prescribe opioids for initial prn use or directly convert usual opioid medications to a continuous subcutaneous infusion when withdrawing CANH. Almost all clinicians titrate according to need. Some follow the RCP protocol as to initial starting doses and a minority (n = 2) escalate as advised by the guidance to 60 mg/24 h.

Ninety-two per cent of clinicians prescribe sedatives for prn use or directly convert usual sedative medication to a continuous subcutaneous infusion when withdrawing CANH. Almost all clinicians titrate according to need. Some follow the RCP protocol.

Where present, 65% of clinicians remove a nasogastric tube and 23% remove an endotracheal tube on withdrawal of CANH. Seventy-three per cent discontinue all medication except those in place for symptom management.

Fifty-six per cent of clinicians admit a patient to an inpatient facility to withdraw CANH and provide care when the patient is dying. 43% admit to an inpatient hospice ward, 11% to a rehabilitation ward and 11% to an acute hospital.

Symptom management on the withdrawal of CANH

In 81% of cases, there was no reported difficulty with symptom management on withdrawal of CANH. Where difficulties arose, they were as likely to occur in both palliative and rehabilitation settings. Difficulties encountered included interpretation of movement and symptom assessment in an unconscious patient (three), care setting (two, with one patient moved to a high dependency unit to start an IV infusion, one family refused hospice admission on reading RCP guidance), agitated behaviour (two), thirst (one), troublesome secretion burden (one), seizures (one). Eighteen per cent of respondents described signs of autonomic dysfunction, one respondent described autonomic storms.

Staff views on 2020 RCP guidelines

Respondents reported mixed views about the RCP guidelines. Some reported that they found the guidance useful and others noted the limited underpinning research. Many raised concerns about the advice to escalate to acute care to withdraw CANH, staff reported concerns about the advice regarding intravenous access and initial doses of opioids and sedatives, and most do not follow the escalation process described in the guidelines. The update due in 2025 is welcomed.

Staff views

Forty-eight per cent of respondents worked with staff who expressed a conscientious objection to withdrawal of CANH, two-thirds of whom worked in rehabilitation medicine. The need for extensive preparation for withdrawal, opportunities for questions and debrief were described. Rotas and working patterns were modified to accommodate staff when needed. This was not always possible; two respondents described a lack of support; one consultant doctor was single-handed, so needed to provide clinical care despite expressed conscientious objection. Three respondents described difficulties when staff have a long relationship with the patient and their family over years.

Discussion

Experience and confidence in the practical management of care at the end of life following the withdrawal of CANH has grown for both rehabilitation and palliative medical physicians since the publication of the 2020 RCP guidance. Care is provided safely in the patient’s usual place of residence and in hospices. Approximately 90% of respondents use a subcutaneous route of administration, titrating analgesia and sedation based on patient need. Symptom control is achieved without difficulty in 80% of patients. The guidelines need to be updated to reflect current practice.

The move from a protocol-driven approach to a responsive, individualised plan of care is unsurprising as the medical community, particularly specialist palliative care physicians, are skilled at managing symptom control and titrating medication for patients dying with organ dysfunction. 2023 guidance for those voluntarily discontinuing eating and drinking also adopts an approach that is responsive to managing symptoms as they arise.⁵

Neurorehabilitation physicians can educate other healthcare staff about symptom assessment and autonomic dysfunction in patients with PDOC. This will support communication with those important to the patient who are at the bedside.

This paper has limitations, including recall bias. However, it describes clinical practice among palliative and neurorehabilitation colleagues. Respondents reported practice in the UK and Republic of Ireland. The law about mental capacity varies across jurisdictions.

Withdrawal of CANH in patients with PDOC is rare. Forty-eight per cent of palliative medicine physicians had seen 1–4 patients with PDOC over a 5-year period. In addition to updating the RCP guidance, development of consensus guidance using a Delphi process would be a helpful next step, as would a register of patients with DOC who have a best interests decision to withdraw CANH.

Conclusion

National guidance should be updated to reflect clinical practice with regard to place of care, the effectiveness of a subcutaneous route and the use of proportionate symptom management.

CRediT authorship contribution statement

Mary Miller: Writing – review & editing, Writing – original draft, Methodology, Formal analysis, Data curation, Conceptualization. Tim Harrison: Writing – review & editing, Methodology, Conceptualization. Siobhan Barrie: Conceptualization. Anton Pick: Writing – review & editing, Software, Methodology, Conceptualization.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix B. Supplementary materials

Appendix 1: Questionnaire Thanks to our colleague Dr Barrie for their support with the study and to all our colleagues for taking time to describe their practice.