Advanced Care Planning April 2019 Margaret Fitch Toronto Canada

Plan for session What is advanced care planning (ACP)? Why is it important? What is the nursing role for engaging people in the conversation about ACP? How it is done? What are some available resources?

ACP defined Advance care planning is a process to help people to formulate and communicate their preferences regarding care during future incapacity. Advance care planning gives the person the opportunity to determine the likely scenarios coming towards the end of their lives, including the treatment they receive and the way they would like to be cared for.

ACP vs advanced directives Advance care planning may lead to, but should not be reduced to, the development of an advance care directive and/or the appointment of a substitute decision-maker. Advance care directives, alternatively termed advance directives, advance heath directives or ‘living wills’, may be defined as a set of documents containing instructions that consent to, or refuse, specified medical treatments and that articulate care and lifestyle preferences in anticipating future events or scenarios. Advance care directives have legal status and are intended to support a person’s previously articulated preferences to be upheld when they are not competent or capable of making informed decisions.

Goal of ACP Advance care planning and advance care directives emerged as a way to provide a practical mechanism for promoting patient autonomy and self determination at the end of life, including when patients are no longer capable of decision-making, by promoting treatment decisions that reflect those the patient would have made. The central goal of both advance care plans and advance care directives is to ensure the centrality of the patient’s voice in medical decision-making and honour patient preferences about end-of-life care.

Advanced care planning A process of reflection on values and wishes The communication of wishes (verbal, written or otherwise) when you are capable A way to let others know your future health and personal care wishes The consideration for who will speak for you when you are no longer capable of directing your care – your substitute decision-maker

Why take part in advance care planning? Individual who engaged in ACP and/or appointed a substitute decision-maker: Are much more likely to have their end-of-life wishes known and followed Have family members who had significantly less stress and depression Are more satisfied, as were their families and substitute decision-makers

What we know Individuals who engaged in ACP and/or appointed a substitute decision-maker: Have fewer life-sustaining procedures and lower rates of intensive unit (ICU) care Have a better quality of life and death Have less costly care in last weeks of life

Why do Canadians not engage in advance care planning? Don’t want to upset family 48% Afraid of death 45% ‘Creeped out’ by the conversation 38% Feeling healthy and don’t have to: 43%

The role of nurses in advance care planning Nurses provide care To Canadians who are healthy along with those who are diagnosed with chronic or life-limiting illnesses Across the life span Across all settings

Nurses play a key role by… Initiating conversations Honouring values and health-care wishes Advocating for and supporting people

The nurse’s role re ACP To encourage people to engage in ACP – a process reflection and communication To help people express their wishes for future care including that received at the end of life To ensure significant others and substitute decision-makers know their loved one’s wishes

To enact role Nurses need: Information Materials for patients Guidelines on when and how

Who needs to do advance care planning? EVERYONE You never know when you may face an unexpected event or illness and will be unable to make your preferences known You may hope that you will be able to communicate until the very end, but this is not possible for most deaths

The conversation Central to advance care planning is the conversation - to discuss wishes with family, friends, substitute decision-makers and health care providers Conversations should begin early – while we are healthy – and certainly at the time of diagnosis of chronic illness

Quote “I didn’t expect him to die so soon. My husband resisted talking about dying and after 40 years of marriage I feel he let me down by not opening up and I guess I let him down for not knowing how to talk about some of the things that I needed to discuss. It would have been nice closure if things had been different in the end. I can never get that time back.” CANHELP study participant

Advance Care Planning Think Learn Decide Talk Record

Advance care planning Step 1 Think about your values, wishes and beliefs Consider how much you understand about your care and specific medical procedures

Advance care planning Step 2 Learn about different medical procedures and what they can and cannot do

Advance care planning Step 3 Decide who will be your substitute decision-maker It should be someone who is willing and able to speak for you if you can’t speak for yourself

Advance care planning Step 4 Talk about your wishes with your substitute-decision maker, loved ones and your health care provider(s)

Advance care planning Step 5 Record your wishes. It is a good idea to write down or make a recording of your wishes.

Speak Up Campaign Initiative to promote and facilitate advance care planning in Canada Tools are available on a website for health care professionals and community organizations/agencies www.advancecareplanning.ca

Raising awareness Social media Media engagement Seasonal campaign Infographics Videos Blogs, PSAs. Templates Champions

Trends: Emphasis on Decision-making (Levinson et al, 2005; Luce, 2005; O’Connor et al, 2003, Woolf et al, 2005) Shift towards greater patient control in health decisions Less paternalistic health care system Increased patient autonomy Access to information Expanding clinical options Prevalence of chronic illness

Canadian Resources re APC Workbooks (print and online) Videos Wallet cards Provincial and territorial resources Cancer-specific tools “Just Ask” conversation card Primary care toolkit

Workbook for patients and families Think and write about your values and beliefs Learn about end-of-life care and medical procedures Write about your preferences for care Share with your substitute decision-maker, loved ones and health care team

Wallet card

Provincial and territorial resources

Cancer specific resources

“Just Ask” Conversation Card

Talking about ACP “Advance care planning helps you to think about, talk about and document your wishes for healthcare so you’re an active participant in the planning process.” (pause) ‘We want to see you as an active participant. We don’t want you feeling like, ‘You know what, this is all going on and people are making decisions about my healthcare without me being involved.’ That’s why we really like to talk about advance care planning when you’re feeling able and not in a health crisis.” (pause)

Starting the conversation… What does good quality of life mean to you? How important is it to you to remain independent? Do you value making your own decisions? Are you concerned about letting another adult make medical decisions for you if you are unable? What worries you most? Are there any medical treatments you would surely want when facing the end of life? Any treatments you might refuse? When thinking about serious illness, what are you afraid of? What role do you want your family to have in making decisions about your health care? If your family wants to protect you from receiving information, should the medical team honor these wishes? What does “dying with dignity” mean to you? What does “dying a good death” mean to you?

Example of interaction Patient: My daughter had cancer and it was awful watching them do all those painful things to her. I don’t want any of that. HCP: You don’t have to go through your daughter’s cancer journey. Most people, when they hear of things like cancer, think about all of the things that people they love went through. What we want to do is make sure that you know what’s available to you so you can get back to living as best as you can and have hope for that living. We can help you plan your healthcare with something called advance care planning. We offer advance care planning to everyone 18 years and older. (pause) I would like to tell you more about advance care planning. Would that be okay with you?

Example: patient in crisis Mr. Jones, as your doctor I want to provide you with the best possible care and make sure that I am giving you the care that you want. We have advance care planning that we offer to everyone 18 years and older. (pause) Advance care planning helps you to understand what healthcare options are available to you. Then you decide how you want us to care for you if you are not able to speak while you are ill. (pause) I would like to tell you more about advance care planning. Would that be okay with you?

Example: patient is stable As a healthcare provider, it is my goal to provide you with the best possible care and make sure that I am giving you the care that you want. One way I do that is by meeting with patients to talk about health planning. We have advance care planning that we offer to everyone 18 years and older. (pause) Advance care planning helps you to understand what healthcare options are available to you. Then you decide how you want us to care for you if you are ill or injured and not able to speak. (pause) I would like to tell you more about advance care planning. Would that be okay with you?

Talking about ACP My hope that everyone can make their own healthcare decisions right up until they die, but we can’t predict that. I’ve heard of healthy people who slipped on the ice, hit their head, had a brain bleed and it was just totally unexpected. Advance care planning is a little bit of peace of mind for all of us. (pause) We can’t protect ourselves all the time and walk around in bubble wrap. But if you plan ahead, at least other people know what you want if something happens. That can help relieve some of the stress during a crisis. (pause) If you have an advance care plan, someone you trust is set to help guide your medical care. Does that make sense? (pause) No one can make you do advance care planning. I can only give you information, answer your questions and help you with the process. It’s something you choose to do. Do you have questions about what I have said so far? (pause

Primary care tool kit Posters Infographics Handouts for patients Info sheet for providers Workbook Videos

Let’s talk Have you thought about your values and wishes? Have you talked with others about your wishes? Have you decided on your substitute decision-maker?

Important to note… It is an on-going process. Perspectives change with time and circumstances. Need to recognize the desire/wish of an individual NOT to engage in the process

It’s about conversations, It’s about wishes. It’s how we care for each other. www.advancecareplanning.ca

A ‘good’ death? What does a good death mean to you?

Criteria for a ‘good’ death Person died in the location of their choice Person died with pain and other symptoms (physical and psychosocial) managed (not suffering) Person knew what was going to happen and felt prepared for it (emotionally and spiritually) Family knew what was going to happened and felt prepared for it

Questions or comments?