Since the year 2008, the month of May has been dedicated to raising awareness on death and dying through the efforts of the Dying Matters Alliance; the idea behind Dying Matters is to encourage people in society as a whole to discuss death and dying. While the COVID-19 pandemic has caused pain and distress for dying patients and their close families, there has also been a positive outcome, in that the pandemic has also clearly shown that dying can no longer be hidden, silenced and treated as a taboo subject. It is also true that, while episodes of people dying in hospitals has arguably shaped the image of the pandemic, many more died at home (in some cases alone, due to lockdown restrictions) away from the glare of public cameras, and with some visits from community nurses. According to Hospice UK (2022), ‘more than 100 000 additional people have died in their own home across the UK since the start of the pandemic’ which translates to about ‘1000 excess deaths at home each week since March 2020’ (Hospice UK, 2022).
Some people decided to miss their regular hospital outpatient appointments during the pandemic for fear of contracting the virus, thereby increasing the risk of dying from diseases that could otherwise be treated. While it is generally accepted that most people prefer to die at home, the reality is a home may not have all the facilities and equipment required to manage palliative care and to ensure a dignified and pain-free death. More importantly, there is the challenge of dying without letting others (healthcare professionals or close friends/family) know of your wishes.
This month's column revisits something we at Dying Matters did in May 2018, when we went into our local city centre and asked members of the public to write down on flipcharts (or to tell us) what they were going to do before they died.
Since the pandemic, we decided to ask the same question again – but this time to our readers, with the objective that they may also be able to help patients in their community to consider the same. Box 1 gives you some prompts to think through.
Box 1.Question prompts to readersWhat can I do to prepare for death?This relates to your own death, and how to put your own physical and psychological house in order.What can you do to get the death that you want?This relates to you making your wishes known and clear while you can, so that they can be respected when you are dying. However, it is important to understand that, in many countries, including the UK, assisted dying and euthanasia are not legalised.What can you do to avoid dying in a hospital?Most people prefer to die in their own homes, and this gives you an opportunity to clearly state your wishes and preferences to your family and healthcare professionals.What can you do to make sure your own wishes around your death are respected?It is important that you write down everything, both formally (for example, advance care planning) and informally (for example, in a notebook at home).What can you do to talk to your family about your own death?This requires the courage to discuss death with your family well before ill health appears so that it does not come as a surprise.What can you do to help those you leave behind when you die?Those left behind always want to do the right thing by you, so you can leave them clear instructions of what to do. You can even plan your own funeral (with them) and also write or update your will.What can you do to share your thoughts about death and dying?It is important to always talk about your thoughts, fears and expectations. This can be done in shorter conversations.What can you do to help a friend or neighbour who is approaching death?Most people appreciate knowing that those close to them are there for them in times of crisis, and dying is no different. However, it is important to get to know your neighbour during happy times first.What can we (others) do to help you express your feelings about death and dying?There are a lot of suggestions already offered here; it is now up to you to make that final decision about what you want to do with your life and death. This is also the type of question you could ask your patients within the community and help them to think about their own death. You can encourage them to communicate with their family first and then the community nurses and GPs as well.
There are so many different ways to look at these guiding questions and ways you can help yourself and others, such as:
- Joining a group of like-minded people who want to openly talk about death and make it part of life
- Engaging in poetry that can have therapeutic power to enthuse the mind while making dying bearable
- Starting a workshop where you can invite people to come and talk freely about death and dying
- Attending a death café which may help manage our own death anxiety while talking about death with strangers (with most death cafés, there is a chance coffee/tea and biscuits will be served).
With all these possibilities, it is important not to expect to derive any therapeutic value (like counselling or bereavement support), and instead to only attend these groups to help yourself talk openly about death.