The Practical Side of Death: Advance Care Planning

Last updated: July 2019

Editor's note: Anita lives in the UK, so some of the terms used in this article are not necessarily identical to terms used in the US. However, most of the concepts do exist in the US, so we hope that this article is still helpful for all. For more information on this topic, see our Glossary of Terms for Advanced Care Planning.

Advance care planning

I would recommend that anyone with a life-limiting disease should really complete an 'Advance Care Plan' (ACP). This can be done at any time in your life and regardless of illness. We really do need to think about what would happen to you in the event of a life-changing accident or illness. What would you want to happen to you? What care would you receive? Would you like to be resuscitated?

What is an advance care plan?

The ACP is the "how' we envision during our dying days; it is a voluntary document that communicates your wishes in the event of you becoming ill. It takes into account if you wish your organs to be donated, whether you want to spend your last days in a hospital or in hospice or home. This can be done by liaising with your healthcare team, who will have your best interests at heart and will work alongside your wishes.

ACP's are not legally binding; however, your healthcare team will do their best to follow your wishes if you communicate with them. I would recommend doing this, as this is YOU speaking about how you want your last days to be, from DNR"s (do not resuscitate), refusing CPR, refusing other treatments, organ donation, etc. This can also be done via a Lasting Power of Attorney Health & Care form.

What is lasting power of attorney?

The Lasting Power of Attorney - What does an LPA mean? It is a legal document which you use to enable someone you know and trust (I cannot stress this bit enough) to act on your behalf. It creates a legal relationship between yourself and a person who has been appointed by yourself.

An LPA comes into force the minute you have signed it and had it witnessed by two people. You can be as specific as you like. For example, you may decide that the power of an LPA doesn't come into force unless you have a life-changing event, like an event that prevents you from being able to speak/act for yourself.

Your LPA will require an 'affidavit', a written statement showing that an event has occurred triggering the powers of the LPA.

When you give someone the power of an LPA, it does not take away your right to manage your money, property, or healthcare, although they will have access to your money which is why at the beginning of this article, I stressed that the person you chose has to be trustworthy. As with anything in life, everything can be open to dishonesty, so please make sure that the person you chose is someone you trust implicitly.

You can always change your mind

In a dishonest circumstance, you can revoke an LPA at any time. You will need to draw up a statement saying so and get two people to witness and sign this form. LPA's can be done both for financial decisions as well for your health and care.

Preferred Priorities for Care

PPC's were initially created for those with cancer; however, I think this is a great idea to do. The PPC allows you to prepare for your future and will detail your preferences and priorities for your care at the end of your life.

The PPC's are not legal documents and may be altered at any time. They enable your healthcare team to see what is important to you, your beliefs and values when it comes down to your care. It will detail what you do and do not want, as well as where and how you would like to be cared for at the end of your life. This works alongside your Advance Directive (Living Will).

The advance directive

Sometimes is known as a Living Will, this is a written statement of instructions about your medical care. It is here where you can state what treatments you would like or not like, in the event of you being unable to communicate your wishes. You must be 18 years old or older to do this and must have Mental Capacity.

Mental Capacity is defined as "someone who is able to make their own decisions."

An AD is a legal binding document in which your healthcare team are able to see what your wishes are and then will be able to act accordingly. You need to be very clear and concise about what your wishes are with regards to refusing treatments, and DNR's (Do Not Resuscitate) documents.

Making your wishes clear

Your healthcare teams will try to adhere to your wishes as best as they can, although there can be expectations, like if you ask for a certain treatment and your doctor doesn't think it is in your best interests, he or she can then go against what you have written or if your wishes are not clear.

To make an AD, you are required to put your wishes into writing and update your notes at your hospital and doctor's offices. Make it perfectly clear if you want to refuse any type of treatments and include a statement confirming that you are refusing any life-saving treatments, if this applies.

A DNR (do not resuscitate)

A DNR is a legal order; this can be written by you or spoken orally. This will indicate that you do not want to receive Cardiopulmonary Resuscitation (CPR) in the event of your heart stopping. You can use your Advance Directive to make this very clear. The DNR does need to be signed by a doctor.

We have to start being accountable for ourselves and there is no point in leaving making wills and leaving advance planning until the last minute, or not doing it at all. Taking control of our death is empowering. It is freeing, and we all should start to do this.

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