Working within the care sector dealing with death, dying and bereavement is intrinsic to the role. However, every episode of care that results in a death will have a different impact on individual staff.
The ability to cope with death in this way is managed by taking comfort in the fact that the person received the best care possible, did not suffer, and that their death was not as a result of neglect or poor delivery of care.
In my early nursing days, I worked in an Oncology ward. I remember the difficulty in trying to care for people newly diagnosed, alongside those receiving chemotherapy and those being nursed at end of life, all within the same unit. I decided to undertake a Death, Dying and Bereavement course to help me cope.
It certainly wasn’t the most upbeat course I ever undertook but it definitely opened my mind and my ability to think beyond what was simply happening. It referred to death as taboo, the subject that no one wanted to talk about and challenged me to ensure that talking about death and dying should be something that needs to happen alongside caring and compassion, to ensure good care.
Everyone who has nursed anyone can always remember someone that had a good death, and sadly someone who did not. Getting the time and the opportunity to go through the grieving process and reach a point of acceptance is what is considered by many as a good death. This allows decisions to be made which enables things to be planned as the person would’ve liked, wishes to be exercised and also lessens the burden on their family by preparing a will, and/or creating an advanced care plan. We all grieve differently and it is important to understand the stages of grief to help ourselves and others. The stages can be interchangeable and in time become less intense. On realising that death is imminent, most people initially experience shock and fleet between denial, fear, anger, bargaining and finally resulting in acceptance, if they can. This process can be typical for both the person dying and those close to them.
Loss due to Covid 19 has however presented different challenges. The rapidness in the deterioration for some people has resulted in the same depth of grief as that felt in a traumatic death.
Traumatic deaths due to accidents, suicide or murder often leave people feeling emotionally detached as they struggle to come to terms with a sudden loss. Guilt in relation to an untimely death is very common and can result in some people never accepting the loss for many years, if at all, with some holding themselves responsible. Not getting the opportunity to say goodbye, not expecting the death or feeling helpless to change anything or intervene, all play a part in extending grief, loss and acceptance.
Initially in managing Covid 19 there is a move between active treatment and recognition that recovery is a potential, whilst at the same time an acceptance that death may be the likely outcome. The two extremes over a short space of time in itself is difficult to prepare for. Although we saw a number of Covid positive people within the care homes improve and recover, sadly a greater number did not, with care homes accounting for approx. 40+ % of Covid deaths.
For staff it has been difficult. In normal circumstances families would have the option to be present throughout the days leading up to someone dying or when acutely unwell, and it is recognised that families require this support in coming to terms with losing someone, as part of the ongoing bereavement process which allows questions to be asked.
Not witnessing the person receiving care to know they were comfortable, without pain and see first-hand the expert care they received can result in families not being able to process what has happened and why. Not having answers to questions or conflicting responses can negatively affect the behaviours of individual family members after the death. Restricting visits in the last few days of someone’s life or not being allowed to be present within the care homes directly contributes to profound feelings of resentment for not being present at the moment when their loved one passed. This enforced estrangement prevents normal healing. All these scenarios have unfortunately taken place as a result of the necessary lockdown restrictions.
Staff within the care home sector unlike other frontline staff know their residents. They have built up relationships with them and those close to them and therefore the pressures of decision making and communicating bad news is somewhat more poignant and difficult.
The lack of political prioritisation of the care sector and delayed staff guidance at this time has without question heightened the effects of caring for someone who is dying of Covid19 or other causes.
The inability to say goodbye in a way they would normally have been able to, to hold a hand or to simply kiss them goodbye are natural responses that have been taken away, would ordinarily directly impact an individual’s ability to cope with the grieving process. Not to be able to act out someone’s wishes is particularly difficult to accept. Funeral arrangement restrictions, the need for recognition of someone’s life, the adherence to support them through their religious and spiritual beliefs and the bringing together of mourners has been particularly upsetting. Covid19 has taken this away from so many, the individual person, the family and the caregiver.
The increasing volume of deaths experienced by staff working within care homes have been particularly traumatic. The residents have lost their lives due to their susceptibility to the virus as approximately 75% of all deaths have been in the 75 years and above age group.
This has been it extremely difficult for staff to accept and to safeguard residents. The management of the protective factors, access to PPE, lack and delays in testing and frontline response to the care home sector has undoubtably resulted in a significant number of deaths, which may have been preventable.
This has left many staff experiencing feelings of guilt as a result, despite them having no real control. Reflecting and debriefing under such circumstances has been considered as not psychologically beneficial as it may make someone replay a situation that could not have been changed.
Staff followed guidance as it was issued alongside the frontline response which should have supported staff initially as they were aware that care homes had a concentrated population from the most vulnerable group and therefore had the highest risk of spread and transmission.
This accumulation of deaths and the pressures around this, alongside negative press coverage at times has impacted on staff wellbeing and psychological ability to remain resilient, resulting in compassionate fatigue. Many staff left their own homes during lockdown to protect their residents, with approximately 40% of care homes having no Covid cases, which is remarkable and should be recognised.
People are experiencing loss in so many ways out width the work environment, also. Loss of physical contact, psychological, social, emotional and spiritual support. The rituals of everyday life have all been on lockdown.
Very few people have not been touched by the impact of COVID19 as we have all had restricted contact with our families and the constant daily reminder of the devastation and loss of lives.
Let’s not forget that staff have to also come to work aware of the potential for them to become unwell from this virus and also the need to protect others, as well as their families, in the knowledge that sadly eight social care staff have lost their lives to this virus, alongside a significant number of other health staff.
The ability to share grief with peers can go a long way to support staff and to find a way to remotely support residents families who are bereaved is also helpful, as it allows the channels of communication to remain open and support people with their loss to heal through this complicated bereavement.
As we move out of this peak into the uncertainty of when this virus will be controlled the only real certainty is that life will never fully return to what we previously viewed as normal.
The taboo of talking about death and dying has certainly been tested with daily updates on death constantly broadcast into our living rooms over the last 10 weeks. Our ability to feel untouched regardless of age has been taken away from us, we learn more of how this virus turned into a global pandemic and how difficult it may be to eradicate.
With anything in life there is learning which will support us to cope as we move forward in our professional and personal lives. Strength will come from adversity and it’s important that we self- care and support the wellbeing of others.
The use of a safe place to take time out, to recharge and reflect has been highlighted as a useful way to reduce the potential of burnout. Leave needs to be taken and built in to also prevent this. It is important that staff don’t view this as a weakness but a necessary requirement to be kind to yourself, otherwise you will simply not continue to function.
Promis.scot is The National Wellbeing hub which pulls together fantastic resources highlighting the use of different available techniques to ensure staff are supported from the appropriate use of counselling, to the use of mindfulness.
An already challenging job has just reached new heights, but we must remember that whatever we are faced with we can simply only do our best with the resources we have available, nothing more, nothing less.
We are only human.
“There is some kind of a sweet innocence in being human- in not having to be just happy or just sad- in the nature of being able to be both broken and whole, at the same time.” ― C. JoyBell C.
Jacqui Neil
Transforming Workforce Lead for Nursing
