Advance care planning discussions

If you are lucky enough to still have parents alive when you reach your 30s, 40s and middle age, it is likely that you have started to witness them slowly ageing. Perhaps they have started looking a little older, moving a little slower. They may have issues with cataracts, aches and pains and minor health complaints, and you are becoming aware that more serious problems are just around the corner.

Future care is a deeply personal conversation and one which you – and they – may be dreading. While nobody relishes the idea of having advance care planning discussions, it is wise to think about how you – as a family – are going to manage your parents’ health and social care in the coming years.

It is imperative to have these discussions if you no longer live in the same city, country or even continent as your parents. This means that you can be sure that they are being cared for according to their wishes and that you have the comfort of knowing and understanding that they have control over what is happening to them. You can also make sure that their wishes are recorded in an advance care plan and that they can make an Advance Decision to Refuse Treatment if they would like to do so.

What is an advance care plan?

“Advance care planning (ACP) describes the conversation between people, their loved ones, families, and carers about their future wishes and priorities for care”. – Gold Standards Framework

The main goal of an ACP is to clarify people’s wishes, needs and preferences and deliver care that meets those needs. It is essential for improving care for people nearing the end of life so everyone involved in their care can plan and provide care that helps them live and die well.

An advanced care plan is a written plan featuring answers to all the questions listed below and more. It may become necessary to discuss this sooner rather than later if your parent is at risk of losing mental capacity thanks to progressive illness or if mental illness means that their capacity can vary.

Your loved one’s advance care plan, or anticipatory care plan, is also known as an “advance statement” – a written statement that talks about preferences around health and social care.

ACPs / advanced statements are added to medical notes, so all primary care and healthcare providers are aware of your loved one’s wishes. You can also make sure your parent has a card – for example, the Compassion in Dying’s “Notice of Advance Decision” card, which explains to medical professionals that a person has made a plan and where it can be found.

Creating an advance care plan has five steps:

  1. Think about the future and what your loved one wants
  2. Talk about their wishes with family and friends. They can appoint a Lasting Power of Attorney or Proxy if they are concerned that they will not be able to communicate their wishes in the future
  3. Record – write down your parents’ thoughts and wishes, and store them safely in the form of an ACP
  4. Discuss – the plan with doctors, nurses and carers
  5. Share – Share the information with people who are caring for your parents, and remember to update it when necessary

Once a plan has been made, you can change it. That is quite common. Any changes need to be told to a healthcare professional so they can record the changes and let everyone know who is involved in your parents’ care.

Advance care planning discussions

While there is no blueprint for these advance care planning conversations, it makes sense to have them well in advance of when they are needed, so you can be confident that you know and understand your loved one’s wishes. But what do you need to cover in this heart to heart? These conversations could include topics such as:

  • If there are choices to be made about your care, who should be making them?
  • Who should be included in discussions about your care? (Friends, family, care professionals?)
  • When you are dying, which care settings would you like to be in?
  • Do you want religious or spiritual beliefs reflected in your care?
  • Do you have any practical issues you are worried about – like who will care for any pets when you die?
  • Would you like to take advanced decisions to refuse treatments of any kind, including anything related to palliative care or end of life care?

This is known as an Advance Decision to Refuse Treatment (ADRT) and lets your family, carers and healthcare professionals know if you want to reuse specific treatment if you cannot make or communicate your own decisions at the time.

For example, you could decide to say you do not want to be ventilated if you cannot breathe alone, or you might want to refuse antibiotics if you have an infection.

ADRTs do not require lawyers to write them, but they must contain certain words to be legally binding. They also need to be signed, witnessed and dated.

If you have a Lasting Power of Attorney in place featuring information about your healthcare, you should let your Attorney know about your ADRP.

What happens if my loved one slowly starts lacking the mental capacity to make decisions?

The Mental Capacity Act (MCA) protects and empowers people aged 16 or over who may lack the mental capacity to make decisions around care and treatment. This can cover life-changing decisions, including moving into a care home or having major surgery.

The MCA allows people to express preferences for treatment and care and appoint someone they trust who can decide on their behalf if they do not have the capacity in the future.

We’re here to offer advice and support

If you are at the stage of life when it is time to have advanced care planning discussions with your loved ones, we know it can be difficult, so are here to help offer any advice or support you may need.

As an award-winning, family-run company, we have over 25 years of experience delivering professional, bespoke and best-in-class home care services.

Call us in confidence on 01753 369088 to discover what options are available to give your loved ones the safe and trusted support they deserve. We are specialists in caring for loved ones, however, distant relatives and friends may be from them.