End of Life Care
Dying Matters is a coalition of individual and organisational members across England and Wales, which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
Recording care preferences during COVID-19 outbreak
There are two things in life in which we can all be certain of. We are all born and at some time we will all die. Sadly in the current COVID 19 Pandemic, the latter is more likely to be on the minds of many people and may be causing some anxieties. We want to help you with regard to your options in thinking about what is important to you and what care might be best for you. Coronavirus (COVID-19) is prompting many people to think about the treatment and care we receive at the end of life. The importance of having a personalised care plan in place, especially for older people, people who are frail or who have serious conditions has never been more important than now during the COVID-19 pandemic.
Planning for care at the end of life is as important as having a birth plan, but often seen to be more difficult to discuss. It goes against our instinct to start planning now for our death. But every adult, of whatever age can look ahead and ask, “what if and what would I want?”
Having these conversations and having a plan provides an opportunity to record feelings, priorities and personal wishes and allows time for discussion. It may not always be possible to follow the plan if complications arise, so the plan needs to be flexible and open to change following discussion and review with all involved in the decision-making process. These discussions are part of preparing for new beginnings and are widely accepted as normal. There are ways to do this now by accessing resources, plan for the inevitable and reduce worry and heartache for your loved ones.
You can choose to make a plan now but review it at a later date in case you want to make adjustments
If you have an opinion about what you would or would not want to happen to you if you became unwell at this time, it’s really important to tell your family and your doctor, and write it down. It is much better to do this now, while you have time to think about it and are able to talk to that close. This is not something new, for many years people have had discussions with loved ones, family members and healthcare professionals to ensure their wishes are documented and known in preparation for end of life care. This is known as Advance Care Planning. We know that many of you have had these important conversations and have recorded your decisions. However, we are concerned that there are still some people that might not have done this yet but who would like to do so. It may be that you have discussed your wishes but not yet documented them or shared them with your GP. By sharing this information with your GP, your records can be updated so that your wishes will be recorded and those who are caring for you will know this important information based on what you have decided about your care & treatment.
If, in the event that you become unwell and you have decided that you would like to stay at home, please be assured that there are services available locally to provide care in at home if this is your preferred place of care. It would help your GP to have this documented in your GP records in order to help you access these services in a timely manner should they be required.
Co-ordinated advanced care planning improves end of life care as it assists in identifying and respecting a person’s wishes about end of life care. This is important to all involved in the care at this time; you as a patient, your loved ones and health care workers. From a family perspective it reduces the incidence of stress, anxiety, and depression in surviving relatives when important conversations have already taken place and the wishes are already known. Your family would know that the care being given, and decisions made are based on your wishes. It may be that you are reading this and thinking about completing an advanced care plan for yourself or helping a loved one. If it is for a loved one currently in isolation, please consider picking up the phone and discussing these important issues.
We know they are difficult conversations to have, but they are so important and for many people, having the conversation with someone who knows and cares about them is going to be much kinder than from a stranger or when feeling unwell. These documents can be completed from the comfort of people’s homes with free specialist support without the need of a solicitor. It is not compulsory to make an advance care plan/decision/statement. It is entirely your decision whether you feel it would be better for you to have these important conversations and you should not feel pressured to make these decisions if you choose not to. If you choose not to do this, your future treatment will proceed with Clinicians making decisions in your best interest in the event that you are unable to communicate your wishes.
We hope that this information will go some way to helping those who do want to have the conversation around these important decisions to do so. We would like you to be able to make informed choices, allay some of your fears and misconceptions and allow you to get on with living. If, after having time to consider this information or discuss with those you want to, you decide that you would like to complete some or all of the above Advanced Care Planning options, there is help available.
You can complete your own plan and share with your GP via post (our letter boxes remain open) or by email to firstname.lastname@example.org Please remember to indicate your preferred contact number so that we can contact you to confirm receipt and discuss with you.
If however, you would like help in completing any aspect of an advanced care plan this can be done by a health care practitioner. In normal circumstances, ideally these discussions would take place with a health care professional that you are familiar with, at an appropriate time and during a planned appointment as part of review of your care and treatment. Unfortunately due to the current COVID-19 social distancing measures, it is not possible to do this in person. We understand that this is a really important part of the care that needs to be provided to many people. We can still have these discussions via telephone if you want to.
You can contact your GP surgery and request a call to discuss advanced care planning with a member of the clinical team at your practice. You can request this to be with a clinician that you know and would feel comfortable in having a discussion with. This may be your GP, Practice Nurse, Advanced Practitioner or HealthCare Assistant. Please inform us when making your request if there is a preferred person that you would like to speak to.
Where possible we will try to our best to accommodate your request, however it might not always be possible, in which case another member of our team will be happy to assist you. These requests can be made by phone or by email via www.billingemedicalpractice.org.uk
If you would like further information and support to proceed in making your wishes and decisions more formal, the attached leaflet provides further advice and details some excellent resources available to help you: DNACPR Patient leaflet
The link below is also another useful resource using videos to communicate the important messages from this document and the attached leaflet.