CARE AT THE END OF LIFE: A guide to best practice, discussion and decision-making in and around critical care

Published 22/10/2021

FOREWORD

Survival rates for critical care patients along with available treatment options have increased throughout the Twentieth and Twenty First Centuries. However, 15-20% of critical care patients continue to die during their hospital admission. End-of-life care therefore remains a necessary core skill for critical care teams. Such care includes:  Symptom assessment and management e.g. pain, nausea, pyrexia, anxiety, delirium, dyspnoea, skin care, thirst and hunger.

  • Enabling patients and those close to them to achieve a sense of control, including strengthening of inter-personal relationships.
  • Minimising distress.
  • Relieving physical and psychological burdens.
  • Ensuring patients (and those close to them) are supported (physically and psychologically) through the course of the dying process.
  • Meeting spiritual and religious needs.
  • Understanding legal and ethical principles related to withdrawal and withholding treatments. There is also a need for all members of critical care teams to acknowledge and convey uncertainty of prognosis; and depending on circumstances, either lead or support decision-making (Walter et al, 2016.) This is particularly the case when patients have lost capacity and there is a need to determine individuals’ (often unknown) best interests. In such circumstances, effective decision
  • Making frameworks are required and involve collaborative evidence gathering, listening, reasoning and implementing appropriate, individualised care plans. Additionally, even if hospital survival occurs after critical care there can be significant physical and psychological impacts on patients and their families. We therefore emphasise a duty to have open and honest discussions about difficult decisions with the intention of increasing public awareness about the burdens as well as benefits of critical care. Such discourse is intended to enable patients, their families and critical care teams to work through shared-decision making processes and enhance individualised care. What we know:
  • Critical care survival particularly when associated with emergency and prolonged admission (>48-72hours) carries significant physical and psychological burdens impacting on future quality of life (Griffiths et al., 2013).  More than 80% of critical care patients lack capacity to make important decisions about their care and management at a time when consideration is being given to withholding or withdrawing life-sustaining treatments (Sprung et al., 2018).  Only 13% of patients dying on critical care have made any pre-emptive statement (Sprung et al., 2018).  24% of critical care survivors are re-admitted to hospital within 90-days of discharge from hospital. The reason for re-admission is usually related to chronic health status prior to original critical care admission (Lone et al., 2018). 5  One in five critical care survivors die within a year of discharge from hospital (Szakmany et al., 2019).  In 2016 approximately 35% of adult in-patients were in their last year of life. In summary critical care teams frequently have to deal with uncertainty of prognosis and outcome. They are required to simultaneously react to changing physiology with resuscitative measures, consider palliative interventions and communicate (with empathy) rapidly changing situations to patients and families during very distressing times. Shared decision-making is regarded as best practice but lack of capacity often precludes this. If more information about patients’ wishes and beliefs were available ICU teams would be better positioned to make Best Interests decisions, enabling individualised care, thereby minimising confusion and conflict due to clear communications about advance care planning (Gross et al 2018.) Such an approach would also have an additional advantage of reducing stress, anxiety and burn-out in those delivering care. This document (full and abridged versions) plus the accompanying lay summary provides recommendations for effective decision-making and resources for clinical teams and the general public. It hopes to encourage open, clear, honest discussions with patients and families enabling improved advance care. Such arrangements will enhance care planning and empower patients, carers and clinical teams to better engage in shared decision-making processes that respect both the philosophical and physiological aspects of individuals’ lives. As an end-note it should be recognised that discussions surrounding organ donation occur when critical care patients are near the end of their lives. If this occurs it involves teams that are independent to the intensive care team. This document will not cover this extensive topic in death but further information about such processes can be obtained from NHS Blood and Transplant. Glossary: The term ‘critical care’ is used throughout to cover the critical care pathway. ‘Intensive care’ is only used when referring specifically to Level 3 care. The terms ‘families’ or ‘family members’ are used throughout as the accepted term to refer to relatives or other close friends.

A PATIENT VIEW – ICUSTEPS

We know that a good death, as well as a good life, is important. When asked in surveys, many people say they would prefer to die at home. No-one says they wish to die in critical care. However, about 300,000 people die each year in hospitals in England (roughly 60% of all deaths) and of these, nearly 22,000 die in critical care units; an average of two each week per critical care unit. We know that critical care treatment, whilst potentially life-saving, can be very distressing for patients. They can be confused, disorientated, and delirious with many interventions being very unpleasant. We can’t ask those who die in ICU about their experiences, but it is likely that some find aspects of the care distressing. We certainly know that families can find the experience distressing. As a healthcare professional, it is perhaps helpful to think about what would be important to you if you were a patient receiving end-of-life care in critical care, or what experiences you would want those close to you to have. We’re fairly sure that kindness and compassion from staff would be high up on your list – an empathetic approach can feel like a lifeline and will be remembered by families for a long time afterwards. From a patient and family point of view, excellent communication from healthcare professionals is paramount. Patients and their families need to know what is happening, especially when there is uncertainty. They may be confused and distressed and they may find it difficult to retain and absorb the information, so it is important to check understanding and have regular conversations. It is likely that patients and their families will not have been able to prepare and plan for being in critical care. The patient may have been admitted as an emergency, with their condition changing rapidly. Many decisions will have to be made about their care, and unlike most other healthcare scenarios, it is quite possible that the patient may not be able share in the decision making. What we do know is that family members have to live for the rest of their lives with the decisions that are made on behalf of the patient. So these decisions must be high quality, transparent, evidence based and in the patient’s best interests, taking into account their values and wishes. This is a big responsibility. Never be afraid to ask second opinions from patients, their families and your colleagues to make sure the decisions are the right ones. There is a lot of good practice out there, but it is likely that the experience of dying in ICU is still a poorer experience than dying in a hospice or at home. ICU staff can learn from other practitioners, particularly palliative care colleagues, and exchange ideas and best practice with hospices. We should aim to actively seek feedback from patients and their families, where possible, in order to gain insight into our own practice. Having staff development sessions where family members share their experiences can also help to improve practice. There is a bigger picture here too, and one that we all have a responsibility for, whether we are healthcare professionals, patients, their families or members of the public. We need to raise the profile about planning for our future care, and start the conversation about what our wishes are in the event of serious illness. A recent survey by Dying Matters found that whilst 68% of people said they were comfortable talking about death, less than a third (29%) of people have discussed their wishes around dying. Only 4% have written advance care plans. We need to do better collectively to start these conversations with our loved ones, and to prompt our healthcare professionals if they don’t initiate the conversation. Knowing the wishes of our family members matters – it can provide doctors and nurses with valuable information if there are life and death decisions to be made and it can save us a lot of heartache trying to second guess what the patient would want. Thank you for reading these guidelines and for your interest in improving the care that ICUs give patients and their families at the end of life.