Advance Care Planning

Talking about what’s important to us and the kind of care we would want if something happened to us and we couldn’t speak for ourselves can be difficult for some people. These conversations can be frightening, uncomfortable, and charged with emotion. As a result, many people don’t plan ahead, they don’t have a chance to talk about what’s important to them, and important questions go unanswered.

Advanced care planning is quite simply the process of thinking about and talking about the kind of health and personal care you or a family member would want if, at some point in your life, you or someone close to you cannot speak for themselves. Advanced care planning is about sharing your values, beliefs, and wishes, and making sure the people you’ve chosen to speak for you understand what matters most to you.

This process should include the person or people you have chosen to speak for you—your substitute decision-maker—and may also include healthcare providers and other people who help you with your life and care planning. It’s about ensuring that the people involved are all on the same page.

Advanced care planning conversations enable the person and those close to the person to have a voice and, by doing so, make life more meaningful. They ensure everyone in a person’s circle of care understands what is important—especially if the person is unable to speak for themselves—help care teams work with those closest to the person to make informed decisions and provide care that reflects the person’s values, and help reduce unnecessary, ineffective, or unwanted treatments and interventions.

Advanced care planning is an ongoing process. Ideally, it starts before the person moves into a long-term care setting. Conversations may have already started about what’s important to the person, and things may already be written down. These essential conversations continue after the person moves in and occur at regular intervals and whenever there is a change in the person’s health, including when the person is nearing end of life.

Each province or territory will have different laws covering advanced care plans. It’s a good idea to check the rules, regulations, and related forms. Clear and open communication needs to be the fundamental principle of advanced care planning. While formal advance care planning directives may be an outcome, the planning process should focus more on establishing ongoing dialogue with the resident or those closest to the resident.

Advanced care planning is a fundamental process to ensure a person’s wishes, values, and preferences are understood by everyone. It establishes the basis on which future discussions and healthcare planning build from. A care conference will take place soon after the person moves into the long-term care setting. They will take place annually and as the person’s health and needs change.

The conference will introduce the team to each other—the person, if they are able, those closest to them, the care providers, and the person’s substitute decision-maker—in order to establish communication in a face-to-face or virtual way, create a meaningful opportunity to talk about what gives meaning to their lives and the kind of care that would reflect how the person wants to live, offer information about the person’s health and which treatments may be effective and which may not be, and provide important knowledge that will help the team provide care that truly reflects the individual’s values and wishes.

Let’s have a look. There are a number of things that should occur before the care conference takes place. A person will be chosen to organize a conference—social worker, physician, nurse, nurse practitioner, or residence care coordinator. A person will also be chosen to facilitate the conference, usually a person in a leadership role from the care team who is familiar with the individual. Family members, substitute decision-maker, nurse practitioner, and physician will be invited to the conference.

If the person is capable, they, along with the family members or friends and substitute decision-maker, should be provided with a family SDM questionnaire. The lead will let relevant staff know about the care conference so they can plan to attend, or so they can let the facilitator know ahead of time if they have any concerns for the resident.

Henry Hanson is 85 and has multiple chronic illnesses, including Parkinson’s disease and congestive obstructive pulmonary disorder. Henry has recently moved into a long-term care setting. One of the first things the home does is to arrange for a care conference to gain an understanding of Henry’s values, wishes, and advanced care planning.

The healthcare team has reached out to Henry’s family members and asked them to complete a family substitute decision-maker questionnaire. The care conference involves the resident Henry, family members including Henry’s substitute decision-maker, and key members of the care team including those directly responsible for Henry’s care—Henry’s physician, floor nurse, and the home’s care coordinator.

Penny is the care coordinator at the long-term care home where Henry lives and will act as facilitator for Henry’s care conference. She has asked participants to bring notes to the meeting and encourages them to take notes during the session as well. She has reserved a quiet room which is secure and private. Penny has set up a flip chart in order to get key points down from the session in a way that Henry will be able to see them clearly. Penny also ensures privacy by placing a “meeting in progress” sign on the closed door, turning off her phone, and silencing notifications. She invites others to do the same.

Penny begins by introducing everyone, then explaining the purpose of the care conference. “Welcome everyone. Today we’re focusing on giving people a voice—Henry, his family, and the care team too. This conference is all about one person: Henry, and what’s important to him.”

Penny polls the group, asking each person what concerns them about Henry’s current needs. This is part icebreaker but also a deliberate way to reveal the often large variation of perceptions about this topic. Penny has brought copies of the family SDM questionnaire and invites Henry and the family to share their concerns based on the questionnaire. She invites Henry to begin, and he starts off with a smile.

“I’m glad you’re all here, physically and virtually.”

Audrey speaks up. “There are some practical things my brother Peter and I have talked about. We’d like to make sure Dad is able to watch TV in his room whenever he wants to. He’s quite used to headphones, by the way, and if it’s okay, I know he’d love a Guinness perhaps once a week as a special treat. Can that be arranged?”

Peter joins in remotely. “We’d like it if you could ensure he gets as much exercise as possible, especially some of those really important movements, like being able to keep up strength and balance and getting up and going to the washroom. I’m sure the staff already knows that Dad loves life, he has a great sense of humor, and enjoys spending time with other people.”

Penny adds, “We’ll do our best to ensure he receives exercise within his abilities and wishes.”

Henry smiles. “I love exercise, and I kind of love a beer now and then too.”

He now takes the opportunity to make a more serious point. “Can I say something?” He looks around and sees everyone nodding. “There’ll be a time when I won’t be able to talk for myself, and I know that’s coming. I like how we’re talking about what I want today and getting it sorted out. Audrey, as we previously discussed, I’ve chosen you as my substitute decision-maker. I need you to know that I trust you. You’re my favorite daughter, you know that, don’t you?”

“Dad, I’m your only daughter,” she replies. The group laughs, and Henry looks skyward, amused. He replies slowly but with a measure of compassion that reflects his love for his kids. “I know, Audrey. You can talk to your brother too on these things. I trust both you and Peter.”

Penny speaks up. “As your dad said, his conditions are progressive. They will get worse over time. We will provide the best possible care, but Henry, your breathing will become more difficult as time passes and you will become weaker. There are always things that we can do to make you comfortable and help manage any pain, but at a certain point, other interventions probably won’t make a difference and might affect your ability to enjoy life.”

Henry says, “I know. I’ve thought about this a great deal. I want you all to know that when I am no longer able to be independent and get pleasure out of life, I don’t want any heroic measures just to keep me alive. I don’t want to wind up in a hospital on a ventilator if there’s little chance that I’ll recover.”

Audrey gets a bit upset. “Dad, we don’t need to talk about that now.”

“I think we do, so we’re all on the same page. Quality of life is very important to me.”

“But what if you change your mind?”

Penny says, “This is why we will keep having conversations like this. We will check in with all of you anytime there’s a change in Henry’s health so we make sure we’re following Henry’s wishes. It’s helpful for us to have these conversations so we know what’s important to him.”

Penny sizes up the group and determines that it’s okay to wrap up the session. “Thanks, Henry. I think that what we’ve done in this care conference is demonstrate how we will support Henry, Audrey, and Peter as we move forward. Okay, let’s talk about what advanced care planning means for you as a family and for us as a care team, and then review Henry’s care plan together.”

As the session wraps up, Penny will summarize the discussion and record this on a plan of care conference summary. In the days following, Penny will inform team members of the plan of care and place this information in Henry’s chart or in an accessible place where team members can review it.

During Henry’s time in the long-term care home, Henry, his family, and the care team will have regular care conferences, especially when there is any kind of change in his health. Each time they will revisit Henry’s values and wishes and ensure they are all still on the same page. Has anything changed? Do they need to adjust his care plan and goals of care?

As time passes, Henry’s health deteriorates. He begins sleeping most of the time and isn’t able to communicate, so Audrey, his substitute decision-maker, has to speak for him. Let’s look in.

Audrey’s visibly distressed. She says, “I noticed that he’s not eating much anymore. He was quite clear that he didn’t want to go to hospital, but I wonder if it would help.”

Penny responds compassionately. “Your dad is at the stage where his body is shutting down. A feeding tube or any other type of intensive care might prolong his life for a while, but it will be uncomfortable and will likely reduce his quality of life. What do you think your dad would want?”

“I—I know he wants to die here, in a place that feels like home, with people around him who care about him. It’s just so hard to see him so weak.”

Penny comforts Audrey and nods. “Your dad likes the way the sun comes in the window and being able to hear the birds in the garden. We will keep doing everything we can to make sure he’s comfortable and well cared for.”

Some things to remember about the care conference: the model we’ve shown here is typical, but your care conference might be quite different in terms of family dynamics, cultural norms, availability of staff, who is at ease talking about things, and the patient’s ability to represent him or herself as well as Henry has in this scenario. The conference does not replace any ongoing advance care processes. It’s an important session, but it represents where things are at a point in time, and inevitably, things change.

Some people speak easily in a group setting; others are quite anxious. And with an emotionally charged subject like how people with serious chronic conditions live as well as they can, it’s important to be sure people feel comfortable and safe during the process and that their input is considered essential to the process. In a family-centered approach to the care conference, no one should be seen as superior. Everyone should be on the same page.

For more information, tools, and resources about advanced care planning in long-term care settings, visit advancedcareplanning.ca/ltc. We’d like to thank the members of the advisory committee for their valuable help on script development.