End-of-life decision-making

The importance of discussing end-of-life care wishes with older people is highlighted even more so during a worldwide pandemic. Commonly, discussions about end-of-life care enable older people and their families to anticipate potential future challenges and to make plans accordingly. Topics include preferred place of care and death, Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders, and ceiling of care and treatments such as avoiding hospitalization and declining antibiotic use at the end of life. End-of-life care discussions are encouraged with the aim to maximize comfort and avoid potentially futile and burdensome interventions at the end of life, increasing the quality of the dying experience for all.

Having discussions about end-of-life care can have multiple benefits. Significantly, it provides an opportunity for older persons to express their preferences for end-of-life care or to indicate who they would like to be involved in the decision-making process. This is important as they may be unable or lack capacity to contribute to these discussions when closer to end of life. There are also benefits for healthcare professionals, given that their confidence to discuss end-of-life care improves when they are equipped with knowledge of patient and family wishes (Poppe et al., Reference Poppe, Burleigh and Banerjee2013). Similarly, when an older person living with dementia is involved in their end-of-life care discussions, carers experience less guilt and feel more prepared and confident implementing decisions at the end of life (Sellars et al., Reference Sellars2019).

Guidelines generally recommend that these discussions take place during the early stages of a disease trajectory, in particular, in conditions where mental capacity may become compromised such as dementia (van der Steen et al., Reference van der Steen2014). During the current COVID-19 pandemic, there are multiple reports that people have not planned their end-of-life care and not previously discussed with family their wishes and preferences should they become very unwell. Many older people including those with dementia are being encouraged to complete advance care plans (Curtis et al., Reference Curtis, Kross and Stapleton2020); however, for some, this may already be too late as they lack capacity. Families may now be faced with new decisions including should they still go and visit their relative during the COVID-19 outbreak? This will be particularly difficult for those who live in a care home or have dementia and may be confused as to why their relatives no longer visit them. Families will be faced with making difficult and emotive decisions on their behalf as proxy. Many of these decisions, for example, about place of care and hospitalization, will need to be made rapidly in an acute situation.

During the pandemic, however, as death and dying become the focus of our day-to-day lives, the impetus for having these discussions and considering our end-of-life care preferences may be brought to the fore. Previous barriers, such as not perceiving death as imminent or difficulties anticipating the future (Dening et al., Reference Dening, Jones and Sampson2013), may reduce. However, other challenges remain such as family carers lacking information to make informed decisions which they fear cannot be altered once made (Kupeli et al., Reference Kupeli2019) or not trusting healthcare professionals’ knowledge (Sellars et al., Reference Sellars2019). Family carers may not have the time to process the information that is given to them to make informed choices or to discuss decisions with other family members such as siblings. Healthcare professionals may not have time or capacity to develop relationships with older people or family carers; most of whom they are unable to meet face to face prior to having these challenging and often difficult conversations. Professionals engaging in difficult conversations often rely on in-person and nonverbal cues to facilitate discussion of sensitive subjects; however, telephone conversations hinder this, and some people may not have access or the skills to use technologies such as video calling.

Families may be struggling to recall what they previously discussed with the individual, considering their previous wishes, and balancing that with would their wishes be the same in the current situation. However, for many where conversations have not occurred, they will be faced with uncertainty and trying to anticipate what they think the individual would want (Lamahewa et al., Reference Lamahewa2018). In making decisions, families will be encouraged to consider the best interests of the individual. For many, these decisions will generate a wealth of emotional distress, anxiety, guilt, and burden (Caron et al., Reference Caron, Griffith and Arcand2005, Forbes et al., Reference Forbes, Bern-Klug and Gessert2000).

The substituted interests model is an approach that may help reduce the stress on family in end-of-life decision-making (Sulmasy and Snyder, Reference Sulmasy and Snyder2010). Typically, decisions made by proxy decision makers are based on substituted judgments which require them to determine what the person lacking capacity would have chosen for themselves. However, studies have demonstrated that the preferences of proxies about end-of-life care do not always match with those of the older person (Harrison Dening et al., Reference Harrison Dening, King, Jones, Vickestaff and Sampson2016). The substituted interests model asks the proxy to describe the values of the person lacking capacity, such as cultural, religious, or personal preferences; important relationships; and who they would want to make decisions. The healthcare professional presents realistic information about the clinical circumstances and then draws on the values of the person to recommend a course of action that will be unique to that person (Sulmasy and Snyder, Reference Sulmasy and Snyder2010). Decision-making becomes a joint process between the proxy and the healthcare professional.

During the pandemic, there has been a public rhetoric around DNACPR plans and hospitalization which may not be helpful. It is important to understand that this is not a binary decision but a conversation that opens up alternative and just as important types of care. Adopting a palliative approach is not denying care but means a person receives a more holistic and person-centered approach that is in keeping with their previous wishes and may maintain comfort, quality of life, and ensure a good death. Society as a whole has their part to play with this; supportive social networks and communities can help to desensitize these conversations and ensure conversations are discussed before acute events, better preparing everyone involved (Sawyer et al., Reference Sawyer, Sallnow, Kupeli, Stone and Sampson2019).

Carers may benefit from support with making decisions (Mathew et al., Reference Mathew, Davies, Manthorpe and Iliffe2016) to better understand their options and the benefits of when a palliative approach may be appropriate. Decision aids which provide information on the decision and the options available have shown promise to support family carers (Davies et al., Reference Davies, Schiowitz, Rait, Vickerstaff and Sampson2019a), this may include novel approaches such as simple rules of thumb. Rules of thumb have been successfully used with professionals when making decisions about end-of-life care for people with dementia (Davies et al., Reference Davies2018). They break down complexity while ensuring not to oversimplify and lose the nuances and personal wishes which are important to consider. These approaches may be particularly relevant during COVID-19 when decisions have to be made rapidly, and there may be less support available from overstretched professionals and services.

Grief and bereavement

COVID-19 will bring forward death for many older people. While grief is a normal part of life and death, circumstances around death can impact the grief process. Having discussions and being involved in decision-making are important elements for helping families and carers prepare for end of life. Feeling unprepared for death is associated with higher levels of complicated grief after death (Hebert et al., Reference Hebert, Dang and Schulz2006). In dementia care, family carers often start grieving before death as they experience a range of relationship and personal losses. Studies show between 47% and 71% of these carers report grief while caring and 20% experience complicated grief after death (Chan et al., Reference Chan, Livingston, Jones and Sampson2013). Carers may experience higher grief if they feel that the dying process was traumatic or unexpected and they may live with regretting care decisions or being unable to say goodbye to their family member (Supiano et al., Reference Supiano, Luptak, Andersen, Beynon, Iacob and Wong2020). These scenarios may be heightened in this time of uncertainty and where families may not be able to see or have physical contact with their relative at the end of life. Families who are able to see a relative who is dying in hospital may then have to socially isolate afterward and not be able to attend the funeral. It is important to note that staff may also suffer from significant grief and moral distress following the deaths of their patients. They may have to give distressing news over the telephone or receive calls from multiple grieving relatives. This may be particularly traumatic for care home staff and other residents who will often consider their residents to be part of their family.

The three-tiered public health approach to bereavement suggests that most people will manage grief with support through their social network (Aoun et al., Reference Aoun, Breen, Howting, Rumbold, McNamara and Hegney2015). Our recent work has shown that among a range of factors relating to preparation for end of life, social support had the greatest impact on grief while caring for a relative with dementia (Moore et al., Reference Moore, Crawley, Vickerstaff, Cooper, King and Sampson2020). However, as we are confined to our homes, access to our social network may be reduced. Electronic and online forms of communication provide a useful avenue of support but may not be accessible to all (Davies et al., Reference Davies, Walker, Hopwood, Iliffe, Rait and Walters2019b).

“All societies have a death system with the basic functions of warning and prediction, prevention, caring for the dying, disposing of the dead, social consolidation after death, making sense of death, and killing” (Kastenbaum, Reference Kastenbaum, Stroebe, Hansson, Schut and Stroebe2008). In times of a contagious disease such as COVID-19, this system can be dismantled, and the cultural and religious rituals that help us process grief may also be stripped away. Funerals may be cancelled or attendees severely restricted. Their value in bringing together the social network to say goodbye and offer support may be lost. COVID-19 requires culturally appropriate and creative approaches to support family to remember and celebrate the life of the person who has died and to reduce the impact of the circumstances of death.