Our guest blogger for this month is Healthwatch Camden Trustee, Dr Louise Jones. Dr. Jones has worked in palliative care for 25 years, both clinically and (from 2005-2014) as lead of palliative care research at University College London where she is now honorary Clinical Senior Lecturer. Much of her work involved Marie Curie and their hospice in Lyndhurst Gardens, Hampstead. Louise’s research has focused on the patient and carer experience of living with advanced progressive illnesses including cancer, non-cancer such as liver and kidney failure, and dementia.
What are we dealing with?
That each one of us will die is the only universal certainty. However, it is also an event that carries a great deal of uncertainty. At times of an international emergency like the COVID-19 pandemic, living with heightened uncertainty is one of the big challenges that we face. We face it as an individual, within our families, within our local communities, and across and beyond our nation.
The risk of dying from COVID-19 remains hard to predict. As it is a new disease, we are learning more about it every day. New risk factors are emerging, some as seemingly simple as men having worse outcomes than women, some as complex as the disproportionate burden being bourne by people from our BAME communities. Healthcare professionals are also finding it very difficult to predict clinically those individuals who are going to experience mild illness, and who is going to suffer significant deterioration. When that deterioration happens, it can be very rapid and take everyone by surprise.
A huge challenge with COVID-19 is that it is a respiratory virus and it is very infectious. This is why the policy of social distancing is so important in preventing spread of the infection and keeping those we can safe.
Over recent years, those providing care at the end of life have tried to enable as many of us as possible to express our wishes in advance about how we would like things to be, for ourselves and our families, around the time that death approaches and afterwards. We have all been encouraged to think that we might have some control over our deaths. One of the shocking things about the COVID-19 pandemic is that such control is rarely possible for people dying from this disease.
There are many challenges.
The clinical course of the illness is unpredictable. The risk of infection for people living in the same household is high.
The risk of health and social care professionals becoming infected at work is high and use of appropriate Personal Protective Equipment (PPE) is important. PPE raises lots of communication barriers for professionals, patients and their families.
It is very difficult for families to visit loved ones in hospital. It is also difficult to look after people at home or in care homes and keep everyone safe from further infection. It is distressing to witness someone to whom you are close who is very unwell, struggling for breath, or perhaps hallucinating.
If someone deteriorates very fast, families may not have the chance to say goodbye. In hospital, the person may be put on a ventilator and it may be a couple of weeks before it is known whether they will live or die. Those who survive may need several weeks to recover and may face long term problems.
When a person does die, because of the infection risk, bodies are being treated differently to normal. This may be particularly stressful as usual religious rites and practices surrounding death are not possible. Such strains and losses are particularly hard to bear in the context of uncertainty, fear and sometimes anger at the ferocity of this disease.
How can we make sense of it?
Epidemics are not new. Most recently, several African countries suffered greatly with Ebola virus and this posed similarly high risks of infection to others. We have weathered swine flu, SARS and HIV/AIDS. In the past, there has been poliomyelitis, smallpox and plague to name but a few of our infectious enemies. Measles is still rife in many countries.
But COVID-19 is new.
We have seen a huge number of lives lost to COVID-19 in recent weeks. People have been unable to comfort the dying, to handle bodies and to attend funerals in the usual way. Most of us have been living in restricted spaces, facing financial uncertainty, worrying about family members working in essential occupations and about those with health conditions that make them more susceptible to the virus or whose other health problems are being neglected.
Good care at the end of life does not aim to prevent or accelerate death. What is does is to try to help patients and their families deal as best they can with the circumstances in which they find themselves. This means taking time to listen, to pay attention to detail, to promote what is possible and accept what is not.
It means offering the best available physical support to the person who is dying, the best environment, the best active care to alleviate their symptoms. It means supporting the people close to the dying person to understand the death, to find time and space to grieve and to incorporate their loss into their future lives.
Can we move forward?
We will get better at helping families affected by COVID-19 and the loss of those they love. The first peak of the epidemic is over, we have learned a great deal. COVID-19 will be with us for some time, hopefully at a manageable level. Together we can all find ways of managing this uncertainty as we move forward.
There will be less infection, fewer people will be dying, professionals will be less stressed and have more time to help families. PPE will be less scarce, we will find ways to help families express their usual grieving practices in a safe way as places of religious worship can reopen taking account of social distancing. We must work together, all communities of all faiths and backgrounds, from all walks of life both personally and professionally. We must listen to each other’s experiences and learn not only about the disease itself but about its wider consequences.
There will be a new normal and we shall be less afraid.
There are a number of free and confidential bereavement services in Camden, which can support you during this period of uncertainty, including Camden, City, Islington & Westminster Bereavement Service (CCIWBS), iCope and Age UK Camden. Please visit Camden Council website for more information on local bereavement services. Information from the Government for families and friends who have been bereaved as a result of Covid-19 or otherwise is available on GOV.UK.