In the information below we have included resources for patients and professionals. There are some videos, downloads and links to other sites that you may find helpful.
Patients: What is advance care planning?
Whether you are fit and healthy or if you have an illness that will get worse with time, it can be helpful to think about what your wishes are for the future and at the end of your life.
From choosing where you might like to be cared for, to arrangements for a family pet, it can give you peace of mind to have thought ahead. It can also ease stress for your loved ones, as they’ll know your wishes.
Even if you’re not approaching the end of your life, you can still plan ahead. It could be helpful if there’s a time in the future when you aren’t able to tell people what you want.
Think about what your wishes are
Some things you might want to consider include:
- how you’d like to be looked after
- who you’d like to spend time with
- how you’d like practical matters dealt with, such as the care of a pet.
These types of questions can help you form an advanced care plan.
Speak to your doctor
If your GP or nurse is aware of what’s important to you they can try to make sure your wishes are met. Check with them what services are available in your area and what sort of support they can provide.
Let your loved ones know what you want
Whether it’s who you’d like to spend time with, or where you’d prefer to die, if family and carers know what you want, it will mean they’re certain of your wishes.
Remember things can change
You don’t have to stick to any decisions you make. Sometimes circumstances change and your plan might change. You can change your mind about any decisions you made about your care at any time, as long as you’re able to make decisions (have mental capacity).
Make sure you know what support is available to you
Whatever preferences you have about your care, it’s a good idea to have a professional you can turn to for advice and support.
Patients: How do I make my wishes known?
Advance care planning starts with a conversation between families and friends which is then written down to ensure your wishes are, as far as possible, respected.
Put your wishes in writing
It’s a good idea to put your wishes down in writing. This means the people close to you and involved in your care have a clear understanding of what you want.
How do I make an advance care plan?
Sometimes your doctor or nurse will suggest planning ahead. But you can also start a conversation about planning ahead with them at any time. Before you make your advance care plan, it may help to talk your wishes through with your healthcare professional, family and friends.
Use the advance care planning form we have provided below or ask your healthcare professional for one. Once you’ve decided what to have in your plan, give a copy of it to the people involved in your care and your family members or friends. This helps to make sure that people around you can follow your wishes.
Telling people about your advance care plan
You can ask your doctor or nurse about how to make sure that other health and social care professionals know about your advance care plan. They might be able to do things like create an electronic record of your plan that could be accessed by hospital staff or out-of-hours doctors. These services can vary depending on where you live.
Electronic healthcare records in England
The NHS in England uses an electronic record system called the Summary Care Record. If you’re registered with a GP practice in England, you’ll automatically have a Summary Care Record unless you’ve chosen not to have one. A Summary Care Record contains important information about your medical history. If you’d like to add information about your advance care plan to your Summary Care Record, speak to your GP.
Professionals: Advance care planning
In 2020, Dorothy House made advance care planning a priority. We want the professionals in our community to have an up-to-date range of resources available for signposting.
Below are two resources that may be useful to you. The two Chat Bundles are appropriate aids for professionals to use when initiating a conversation with a patient, family member or carer.
Additionally, watch a short video with Janet Bilton, an Advanced Nurse Practitioner, discussing the methods that can be employed when having difficult conversations remotely.
Professionals: Advance care planning during COVID-19
COVID-19 best practice for advance care planning has focused largely on the process of recording an individual’s treatment peferences. Evidence suggests that some of the main benefits that patients and their loved ones experience from planning is the strengthened relationships with each other and their clinical teams, and support through the experiences of living and dying. These benefits come largely from the conversations that constitute the planning process, particularly when these occur over time and include the patient’s family and loved ones.
This webinar was hosted by the Dorothy House team and highlights some clinical and non-clinical questions around approaching conversations and how to record preferences.
Professionals: Practical care for a dying person
Are you concerned about how you can practically care for someone who is in their last days and hours of life? This leaflet gives advice on how to help a person in a number of different ways, ranging from giving consideration to the atmosphere, to understanding breathlessness and even how to look after yourself throughout a difficult time. It is important to be aware of what to expect and know how to make the experience as comfortable as possible.
Links & Downloads
Professionals: Palliative Care Handbook
The Palliative Care Handbook, commonly known as the ‘Green Book’, has been written to provide advice on clinical management in palliative care. It is a consensus guide for all staff working with patients with palliative care needs.