COVID-19: how nurses can facilitate advance care planning

Conversations about end of life care are important for the patient and those close to them

  • Preparation of advance statements can provide clarity about a patient's choices for care in the event that they develop symptoms of COVID-19 and their condition deterioates 
  • Nurses are well placed to help facilitate conversations around care preferences
  • For many patients and their loved ones, taking charge of the process by planning in advance will be empowering

It is important to plan end of life care when the patient still has capacity to do so.
Picture: istockphoto

Death and end of life care are familiar topics to healthcare professionals. Most nurses will have cared for patients at the end of their lives and supported families through the death of loved ones.

However, beyond palliative care, healthcare professionals in both community and acute settings often provide support that is reactive. Their focus is on responding to deteriorations in health by doing their best to extend a patient’s life.

Nurses need to be proactive

But the COVID-19 pandemic, with its rapid escalation, risks of severe disease in the frailest and most vulnerable of patients also brings real potential for healthcare rationing. There is no cure for the virus, there are high levels of severe respiratory disease in our most vulnerable, at-risk patients, and low survival rates among the frailest members of the population. The National Institute for Health and Care Excellence (NICE) has already published guidance on decision making and use of critical care resources for those with increased frailty. Therefore, nurses and other healthcare professionals need to be proactive.

Patients and their loved ones should be supported to make choices now, clearly documenting their wishes for the care they would and would not want should they become acutely unwell with suspected or confirmed COVID-19.

View our COVID-19 resource centre

‘It is morally wrong not to be honest with a vulnerable patient with capacity about their prognosis if they are infected with SARS-CoV-2’

This article offers guidance on the purpose of advance statements and advance decisions, and the legal status of such documents. It also explores the impact that conversations about planning end of life care in the context of COVID-19 can have on patient autonomy.

Note that the information offered here applies to England and Wales only.

The importance of timely conversations

Timely conversations about preferences for care at the end of life in relation to COVID-19 are important. Planning now will help concordance between patients and their loved ones so that families are not left to make decisions about their loved one’s care at a time of acute distress.

Planning will also reduce the potential for psychological trauma arising from any doubt that family members have that their decisions are not in line with what their loved one would want.

Most importantly, early planning extends patients’ autonomy in the face of a pandemic that feels inescapable, overwhelming, frightening and beyond our control. The impact of this should not be underestimated. Giving patients the opportunity to proactively document preferences or goals for care should they become acutely unwell may improve quality of life immediately and allow them to get on with living.

How nurses can support advance care planning

Nurses are well placed to address this type of care planning. Many are already involved in supporting patients to write advance statements or produce advance decisions about the care they do or do not want to receive should they become acutely unwell with COVID-19.

But it is important to recognise two things that are happening simultaneously and which may result in missed opportunities for patients to make their preferences known – and these need to be addressed at strategic level.

Staff must rapidly be supported to build confidence in initiating conversations with patients

First, the number of COVID-19 cases has been increasing exponentially. Rapid identification of patients who wish to express their preferences for care formally, but who do not yet have a mechanism in place to do so, must be a priority.

Second, it is highly likely that as contingency plans continue to be implemented and healthcare staff are redeployed, nurses may find themselves unexpectedly well placed to take on this role. But if they are not familiar with what is involved they will need to build confidence in initiating appropriate conversations, so rapid, targeted training solutions must be easily accessed and made widely available.

End of life conversations can be perceived as ‘difficult’. Picture: iStock

Difficult conversations? Difficult for whom?

There is a pervasive view among healthcare professionals that having an end of life conversation is ‘difficult’. This is understandable as the core business of those professionals is preserving life, so conversations about death can feel like failure.

But it is morally wrong not to be honest with a vulnerable patient with capacity about their prognosis if they are infected with SARS-CoV-2. There is also evidence to suggest that while healthcare professionals may assume that patients do not want to talk about death, such conversations can in fact empower patients and their loved ones rather than remove hope.

‘The chances of survival for the frailest patients are low and critical care admissions may neither benefit them nor be available’

To uphold our responsibility to act in the patient’s best interest, in line with the Nursing and Midwifery Council code, it is vital that nurses do not assume patients will want their lives to be extended regardless of their quality of life. The code is clear: nurses must avoid assumptions, recognise diversity and individual choice, and support patients to contribute to decisions about their care, while supporting and documenting any decision to accept or refuse treatment.

In my experience, the COVID-19 pandemic provides a context for discussions about advance statements and advanced decisions that makes these conversations easier. The pandemic is inescapable and is forcing us all to face our mortality. Our daily lives have changed dramatically and this is especially true for vulnerable people self-isolating for a minimum of 12 weeks. Every newspaper, radio station, social networking platform and social interaction makes some reference to the pandemic.

As a result, patients are increasingly aware that those admitted to hospital and who test positive for SARS-CoV-2 will not be allowed visitors and those who die will mostly likely do so without their loved ones around them.

Death from COVID-19 is, of course, not inevitable, but for many patients and their families, having conversations about preferences and goals for care comes as a relief, especially where the nurse facilitating these discussions is sensitive, compassionate, culturally competent and focused on the empowerment and hope that can be found in preparedness.

Advance statements and advance decisions

There are several ways patients may document in advance the care they would or would not want to receive if they become acutely unwell with suspected or confirmed COVID-19. These include advance statements and advance decisions. These are different options with different legal status. Advance statements and advance decisions must be written while the patient has capacity to do so. Capacity refers to a patient’s ability to make their own decisions.

Advance statements allow patients to express their wishes and preferences for care should they become acutely unwell and are unable to make decisions or communicate their wishes themselves. They are not legally binding but have legal standing. This means a healthcare professional must take the statement into consideration when making decisions about the patient’s care.

In the context of COVID-19, advance statements are most useful to express a preference for treatment to be given and to document a patient’s wishes in relation to their beliefs and values. Advance statements can be signed and dated, and a copy kept in the patient’s care record. Copies should also be kept by the patient and their loved ones.

The benefits of making a ‘living will’

Advance decisions are sometimes referred to as ‘living wills’. They are legally binding and allow patients to document their decision to refuse treatment. In the context of COVID-19, an advance decision to refuse treatment can be used to refuse life-sustaining treatment such as critical care, ventilation and cardiopulmonary resuscitation while allowing patients to express their preference for receiving care, including palliation, at home.

If a healthcare professional is aware that a patient has made an advance decision, they are legally obliged to follow it. The existence of an advance decision should be formally documented in the care record and copies kept by all those involved in the patient’s care, and kept by the patient at home where they can be easily accessed. 

Lasting power of attorney

Some patients may benefit from arranging lasting power of attorney (LPA). LPA allows a patient to nominate a person to make decisions on their behalf about their health and welfare, including decisions about life-sustaining treatment. LPA can be used alongside advanced decisions to refuse treatment.

Compassion in Dying has more information on issues to be considered.

Useful resources

The Royal College of Physicians has published a COVID-19-specific guide for patients to help them understand the type of care interventions given to those who need hospital care because of the disease.

Compassion in Dying has produced comprehensive resources to help patients and their loved ones plan care in the context of COVID-19. The organisation provides advance statement guidelines and free advance-decision pro formas, and offers a free telephone information service.

My Living Will also provides resources to help patients and their loved ones plan and produce advance statements and advance decisions.

Marie Curie has a section for healthcare professionals that lists resources produced by a wide range of organisations, which focus on palliation and end of life care in relation to COVID-19. The list is updated regularly as new resources are published.

NICE has produced advance care planning guidance. Although it is aimed primarily at those involved in home-care provision, nurses may find useful the section on capacity and the frameworks for advance care planning and information-sharing.

The Social Care Institute for Excellence has a range of information valuable to nurses involved in advance care planning, including a resource on capacity.

Kathryn Mannix is a palliative care doctor and author. Her Facebook and Twitter pages contain resources to support sensitive and compassionate conversations about dying. Recent posts include sensitive discussions of what critical care for COVID-19 might include and having conversations about advanced care planning whilst wearing PPE.


Conclusion: an empowering act

A significant number of the patients that nurses care for in community and acute settings have underlying health conditions that make them vulnerable to severe respiratory disease if they are infected with SARS-CoV-2.

Furthermore, the chances of survival for the frailest patients are low, and critical care admissions may neither benefit them nor be available.

Nurses are well placed to ensure that patients, should they wish to do so, are given the opportunity to discuss and document their preferences for care should they become unwell with suspected or confirmed COVID-19.

Empowering patients to take control of their health

Nurses can also play a pivotal role in supporting patients to make advance statements that reflect their preferences for care and/or advance decisions to refuse certain types of care.

For many patients and their loved ones, and for nurses too, this may feel like an empowering act as it offers an opportunity for patients to take control of their health during a time of significant worry and fear.

Hazel RidgersHazel Ridgers is a registered nurse and a freelance lecturer in health and nursing