Determining goals of care is a foundational step in making a medical care plan for your person.
It is work that can not be avoided if you want to have a plan because every decision will be based on the person’s overall goals.
If you haven’t already, I recommend you read my first goals of care post (click here) to understand the reasoning behind why this is a key step in being a medical decision maker.
This post is meant to give you practical tips to start a conversation. There are things you must know about your person before you can determine goals of care and I will cover many of them here.
But first, let’s quickly define what we are talking about.
What do “goals of care” even mean?
In my writing I am almost always referring to medical goals of care.
Be aware there are other goals which are also important.
These can be goals surrounding their safety, where they live, what their day to day looks like, who they spend their time with.
There are so many things you can set goals for which will impact the way they live their life.
When it comes to medical goals of care, think about it as the big picture, how aggressive will someone’s medical care be?
Do they want to always have their life prolonged, in some cases have it prolonged, or do they prefer not to have any treatment which would prolong their life?
Maybe your person never communicated their values or preferences with you. They honestly may never have thought about this before. That’s ok.
It is very common.
Most of us go through life wanting everything to be done to save our lives.
When we are handed a diagnosis, like one of the diseases which cause dementia, we should be educated that the disease will progressively worsen. The disease will affect our quality of life.
It will eventually affect how we live our life each day.
It will affect our mental and physical capabilities and it is important to set our healthcare goals while we still can.
This is especially important for those who value their quality of life over the length of their life.
When we are advocating for a loved one who is in this situation, who unfortunately did not communicate their values, and is now not able to, we are not off the hook.
It is OK. We can do it for them.
Let’s not worry about what they haven’t done.
Let’s focus on moving forward and committing to doing this work now.
Don’t be a victim of our healthcare system.
Goals of care are talked about too late in healthcare.
I’ve been working in hospitals for ten years.
The overall trend is that medical professionals who help people make their medical care decisions leave this talk until someone isn’t well.
I could talk for an hour about all the reasons why this is, but I’ll leave that for another day.
Most commonly when we are talking to people about their healthcare goals, the prognosis at that point is usually pretty poor.
These talks are had in the hospital when someone is sick.
We know this person is not going to get better.
They may not be at the end of life right now, but their medical issues, like dementia, will contribute to the way they pass away.
The care team often feels that continuing treatment is affecting their quality of life.
We see the big picture.
The person may not be dying today or even this year, but we know they will continue to have a worsening quality of life.
We are worried that by continuing treatments which have the intention of prolonging life we are causing them to suffer.
We wonder if they would want this.
We are thinking about what is likely to happen next. We think about their future because we understand the pattern of diseases.
We know how they affect people’s lives.
Some healthcare professionals think these things and don’t bring up or ask questions to determine the patient's goals of care.
Why? Because it is not easy to do. Also, it takes time, something physicians and other medical professionals often do not have a lot of.
We talk to a patient and their family, people we’ve never met and don’t have any relationship with. We don’t know what they know.
Do they understand the disease the person has? Do they know what happens long term?
There is a lot of basic education people need to truly be informed and make decisions. People usually don’t have this knowledge when we come to talk to them.
When someone is very sick, oftentimes the patient or the family are overwhelmed. They are often not capable of taking in a conversation like this or making big decisions.
These are just some barriers to having the conversation.
I wish it wasn’t so, but this is why I am here.
I want you to understand goals of care so you can prompt your person’s care team to make sure what the team is doing lines up with what they want, whether or not they are able to still decide for themselves.
You can also prompt your person’s general doctor, their internist, geriatrician, or family physician, to have this conversation with you.
You can read more about my thoughts on healthcare workers’ struggles and biases surrounding goals of care here.
Back to the topic of today.
I wrote this for you if you are going to have to make medical decisions for someone.
This is for you if
- your person is still able to discuss these topics with you, even only on certain days.
- you are ready to determine goals of care on behalf of your person and need a way to guide the conversation between you and another family member who is going to help you.
- it is just you, use this process to consider how your person would respond to some of these conversation points.
It is for you no matter your relation to the person.
Read on to find the most useful nuggets for you.
During these conversations, I want you to have two objectives in the back of your mind.
At the end of these conversations our next step is to determine which of the three goals of care your person has now and what would make them want a new goal of care.
Goals of care are not set in stone.
In general, most people choose less aggressive care as quality of life declines.
Quality of life is the underlying driver behind someone’s choice of goals of care. If you want to read more about quality of life, go read this post.
With this objective in mind, while you have these talks with your person, on your own, or with another family member, the first goal is to figure out how much they value quality of life.
The following are questions I would ask you in trying to help you figure out their goals of care overall. To truly answer them you have to understand what quality of life means to your person.
Do you think they would want every medical treatment until it fails? If this is the case, would they, and do you, understand what this means logistically and how it could affect how they live?
Would they prefer to focus on treatments which protect quality of life and provide comfort instead of prolonging life?
Would they be ok with treatments that prolong life if the team thought they were likely to keep their same or a similar quality of life?
Keep these thoughts fresh while you have the talks.
Your second goal, if at all possible, is to know and hear whether they trust you to make their decisions.
I understand this will not be possible for everyone.
While the person is able to, while you are not in a crisis, it is so helpful to your future self to hear them say they know you will act in their best interest.
Getting them to verbally tell you they trust you to make their decisions will help you when you are faced with hard choices. It will help you to have grit, speak on their behalf, and have peace of mind.
Having a family member tell you they trust you to do what is best for the person can be just as validating.
Moving on, here are four steps for you to follow when having this conversation, keeping the above goals in mind.
Step 1 - Ask permission to talk to whoever you are speaking with about this, especially if it is the person living with dementia.
Consider opening with something like, “It will be my job to speak for you if you can not. I want to make sure I do what you want as best I can. I need your help to feel good about and live with the choices I will make for you. Can we talk about what is important to you?”
Please keep in mind talking about these things is not mean.
We are not asking permission because we feel badly about doing this.
Asking permission is acknowledgment of the importance. It allows them the opportunity to have input and some control.
Whatever their response, it will tell you something.
It could help you the next time you bring up a subject like this. When trying to talk about something sensitive in the future you might learn a better idea of how to start.
Using the words they use later on in conversations can be helpful.
We are bringing up a topic which can be emotional. Their emotions can be clues for you to investigate with further conversation.
If they say yes, move forward.
But if they say no don’t just stop there, try to figure out why they are saying no.
Is there a fear, a concern?
Remember open ended questions allow people to avoid a yes or no.
If they seem worried or scared, verbally acknowledge it.
Say, “You look afraid, what are you thinking?”
Try to figure out the “WHY” behind their objection to the conversation. It is a potential clue.
You can use the same technique in asking permission to discuss this with another family member. Their reaction may teach you something about where they stand mentally on your person’s situation.
It may help you know how they will react when something happens unexpectedly. Will they be open minded, helpful, or reliable to you as you think through the decisions you have to make?
Step 2 - Ask if they spoke with someone else about what is important to them when it comes to their medical care and how they live their life in general.
If they can not tell you, do some digging yourself.
Your person likely confided things in people other than you, especially if you are their child.
Go talk to their friends. If you are their spouse, they may not have wanted to upset you talking about these things and confided in someone else.
Maybe a cousin, niece or nephew they were close with.
Think back to the death of their parent, or a person close to, or loved by them. Who else was around at the time?
They could have had a conversation about what mattered to them at that moment.
It can be invaluable to your future decision-making self to know who they spoke with in the past.
You may want to go to this person now or later and talk about what was said.
Make a note of who you think they would have spoken to if they can not tell you anymore. If you feel a conversation with them would be helpful, contact them.
Send them an email, a text, or pick up the phone and call. Ask if they have a few minutes to chat with you.
If your person can still make their own decisions, it may help you in the future to know people they have spoken with if you are at a decision crossroads and feel uncertain. You will have a potential list of people you can go speak with.
Included in this step, be sure to ask your person about anything they put in writing.
Think of any legal planning done. Ask who their attorney is or was. Where are the documents? Can your person talk about what they wrote and explain why they wrote what they did?
You can ask them specifically if they remember completing an advance directive or living will.
If they do have these documents, try to sit down and read them with your person. If your person is not capable of this, that’s ok.
You need to read the documents and understand what they mean.
You can form questions to ask your person based on what is written.
I have never seen an advance directive which was inclusive of all treatment options and clearly told me what to do in the ER when someone was sick.
They can not be used as a substitute for creating a plan for your person, but they can help identify what someone’s values are when it comes to their care.
Often the spirit of how much someone values quality of life can be interpreted from these documents.
I have used them with families to help explain treatments and discuss whether those treatments go along with someone’s documented preferences about their quality of life.
If you get stuck on the wording in an advance directive, come ask me in my Facebook community.
Step 3 - Ask, or think about how they would answer this question.
What are the things you are worried or concerned about that might happen to you?
Previous negative healthcare experiences, things they have heard happening to others, fears of being in a facility. These are common worries and concerns people have.
Again, try to get out as much detail about the “WHY” behind their concern. The underlying factors making them worried are what you should investigate. This is what is driving their reaction.
In the ER I often say things like, “I hear you. Tell me more about why you feel this way.”
If you can get a sense of where they stand it might help you identify what quality of life means to them.
Here’s an example conversation.
You ask, “Are you worried about having too much or too little care?”
If they say, “too little.”
You then say, “OK, tell me why you feel that way, what are you worried about?”
Maybe you find that it’s not the medical care they truly mean when they say, “too little”, but it’s actually feeling alone. They might fear being left alone and not being able to communicate their care needs.
Can you see why these questions can help you understand what quality of life means to your person?
In this example they fear being isolated, unable to engage with others, or to say what they need or how they feel.
This could lead to the realization that your person would likely feel their quality of life was not ideal, and perhaps poor, if they could not do these things.
When their dementia symptoms, or another disease, makes them unable to interact or engage with others they might not want to have treatments that prolong their life anymore.
Learn what worries them and it can help you understand what is important to them. Things they would not want to live with or without.
Remember quality of life is what drives someone’s overall goals of care.
You will make progress with these talks.
Time out!
I’m hopefully making your wheels spin, but I don’t want to overwhelm you.
Keep in mind, this is not a race.
Yes, these things need to be thought about so you can choose a goal of care for your person, but this process does not need to be done in one day.
When you talk, do not overwhelm the person. Do what they can handle. You know them best.
If you hit a roadblock in your questions, try again another day.
Do not avoid this, but don’t plow through it just to get it done. This applies to doing this with your person, along with another family member, or on your own.
It is a process that can take some time for a lot of people. Sometimes we need to step away and sleep on an idea before we can become clear on what it means to us.
Step 4 - Have conversations to start identifying and recording their tipping points.
What are tipping points?
These are the things about someone’s quality of life which would make them want to focus on and shift to less aggressive treatment.
It comes down to whether they value the length of their life or the quality of their life more.
Often the preference in early disease is focused on lengthening life. As their disease worsens, many value focusing more on preserving and protecting quality of life.
Most people living with dementia will experience a progressively worse quality of life. Either from the disease itself or another medical issue common in those who are aging.
Determining what makes your person have quality of life is work you need to take the time to do with them or on their behalf.
Remember this is not something that needs to be done in one day.
However, you do need to identify their tipping points as early as possible AND document them so you can look back at them over time because they will directly affect their medical care decisions.
Let me give you an example of what I mean by this and why it’s so important to do it early.
Then I want to share with you some resources for talking about quality of life.
I recently had a patient who was living with his wife. They were both in their early 90’s. She was his primary caregiver and was doing a heck of a job. I was impressed. She looked so healthy herself. Way younger than 90.
Her husband had advanced dementia (I can not recall the type). He was no longer speaking, hadn’t been eating well and often had trouble swallowing.
His family was unsure if he could hear.
He was still walking. On good days his wife could assist him to the bathroom. They had in-home caregivers helping her as well.
Long story short, he had gotten weak in the bathroom and fell, no injury, but she couldn’t get him back up.
This happens every day.
EMS, paramedics, were called for a lift assist and he wound up in the ER for evaluation.
Their original goal was to go home, but my concern was because of the early signs of viral infection he was fighting, he would likely fall again and his wife would be unable to manage at home. She and their daughter also agreed and did not want him to go home.
We made this decision, but then it became necessary to open a can of worms in further conversation. Because he was staying in the hospital we had to discuss this risk. We had to discuss goals of care. I could tell this had not been talked about before I brought it up to them at 2am in the ER.
They did not know the treatments for infection in the hospital, or what treatments would happen if he became critically ill. He had a DNR, but I wanted them to understand what happens logistically in the hospital when someone is sick and becomes critically ill before they start to die, which is when a DNR goes into effect.
His daughter thought he shouldn’t have any treatments other than those that focused on comfort. His wife (his medical POA) did not agree.
She told me she wanted him to stay alive.
She specifically said she wasn’t ready to let him go or lose him.
I asked what he would say about how he was living. She told me she felt he would still want to be alive.
During this the patient’s daughter was standing slightly behind her mother, not really looking at me, but shaking her head a bit, clearly in disagreement. There was no arguing. I could tell the two of them deeply loved him and each other.
I heard some commotion outside, stepped out of the room, and was handed an EKG. Another patient was having a heart attack and I had to run off to take care of them.
Later, I was in the hallway and saw his daughter.
She told me her father had what he would say was a very poor quality of life. She was sure he wouldn’t want to have treatments that prolonged his life.
She appreciated me for talking so directly to them about the big picture as she said no one had before.
She felt her mother was understandably so attached to him and was making the decision more for herself out of love for him.
She overall disagreed with her mother, but we both acknowledged the difficulty in making choices like this for someone you love.
I tell you this story because it is just one example of why it’s so important to identify quality of life and tipping points ahead of time.
An outsider like me, and his own daughter, would say someone like him has a poor quality of life on a good day.
Only the person themselves, or their family speaking for them, would know their preference about if they would want their life prolonged while living this way.
When the people caring for the person living with dementia see the person day after day the disease progression becomes normalized. People struggle to see and think big picture and they forget the number one rule.
When we make decisions for someone else we must speak on their behalf. We say and choose like they would if they were able to. If their brains were healthy, they would be capable of learning and adjusting the plan like we can as things change.
I’m not sure when my patient was diagnosed with dementia, but it was likely several years ago.
There was time to do this work.
Think about this for yourself.
Say you were diagnosed with dementia. If you know you will at some point likely become unable to walk, talk, eat, or communicate your care needs, what would you say to your family?
We can identify points in which we no longer want full treatment.
Perhaps this is when we can no longer live independently and have to move into a facility. Or when we also have another medical diagnosis like congestive heart failure.
Maybe we want to focus on comfort when we can no longer communicate with our caretakers. When they do not know what we would like or need to make us have a good day. When they are guessing and troubleshooting when we seem uncomfortable.
It is different for every person, but these tipping points should be thought about ahead of time and written down. They need to be discussed early before someone’s poor quality of life becomes normalized to us.
We can plan to change goals of care when someone’s quality of life changes such that they would not want to continue as aggressive of care. We do this by identifying their tipping points.
OK you now have a process to follow.
Use it.
Remember the two goals you need to have in mind as you work through these conversations.
Follow the four steps.
Keep revisiting these conversations with yourself, your person or another family member until you are clear on your person’s values and preferences.
Then you can learn more about and define their overall goals of care.
I want to leave you with another resource for having these talks.
Go check out the conversation project!
This is a fabulous resource to assist the talk between you and your person. You will get value out of it using it alone or with a family member too.
Pay attention to the section on being a dementia caregiver.
Come and join my Facebook community (if you haven’t already) to discuss quality of life and tipping points. To talk about goals of care.
Your struggle or wins could help someone else and make them feel less alone.
You’ve got this caregiver! Please reach out for help if you get stuck.
Until next time, all my best to you.
Brittany Lamb, MD