Resistance to advance care planning is a real and palpable experience for some people.
We humans love to believe we will always be there to champion our interests and make decisions. But age, health, accidents, disease and injury can all influence this. Being practical about life and the fragility within it can and does save you from the more difficult outcomes.
This is why ExSitu is spending time to countering your (or someone else’s) resistance to advance care planning. Read on to find out more
I won’t be there, so it doesn’t matter
One of the biggest misconceptions is that by the time you need advance care planning, you will no longer have the physical or mental wherewithal to care.
This couldn’t be further from the truth.
Care planning protects you and helps you be heard whenever you are faced with a change in your health or mental health. There is an array of steps you need to walk before you reach the spot where you don’t notice how and why these choices matter!
There are many degrees of care required to support a person after accident, injury, illness and disease that advance care plans cover.
Here are some examples of when advance care planning can help:
- If you lose the ability to speak due to a stroke or injury but retain full control of your mind
- If your care levels exceed what you can provide for yourself, requiring varying degrees of day-to-day assistance to complete care-related tasks
- If you have a pre-existing disability that has specific care and management that others may not be privy to
- You have a life limiting diagnosis that hasn’t progressed to life-ending or terminal stages that does impact your life and life choices
- If you have several comorbidities, you manage effectively but often triage in that management. For example, when mental health and physical health combine, often choices need to be made to balance the sometimes-conflicting needs. It might mean accepting pain and pain relief from a physical disability to reduce anxiety or depression through exercise and other such choices only you would know
- You acquire a brain injury that limits capacity but you still want to take care of yourself
These are only a few of the examples that care planning can cover.
Consider advance care planning in these terms:
- Helping you define what care is appropriate and what is too much reliance in moments where you may need temporary or regular care to fulfill daily needs
- Situations where your care becomes a team effort through family input and/or input from residential care providers
- Choices you have outlined ahead of time so that failing health or a sudden change in status doesn’t get the jump on you
- An aid in the management of treatment regimens by using a big picture based on your values to choose what is next. Especially ones that involve many moving parts
- Answering what happens if treatment outcomes or side effects influence the current course in unexpected and/or negative ways
- Straddling the line between dignity and risk in a way that means your dignity is protected at all times.
Give yourself a voice through advance care planning instead of watching the decisions being made for you.
My doctor can decide what to do
Resistance to advance care planning in a medical environment can complicate things unnecessarily. Advance care planning helps a doctor do their job better, it doesn’t replace the work they do.
Doctors can and do use a wealth of information and practical experience to make all kinds of diagnosis, treatment plans and more. However, doctors are legally required to present the options available to the patient or someone who can make decisions on that patient’s behalf. Usually, this is a power of attorney and/or a next of kin.
There will always be a need for someone else to provide input and advocate for the patient that is not involved medically in the treatments provided.
Advance care plans are designed to make the job of any designated representative easier by specifically dealing with the kinds of situations and decisions that need to be made. Not only because they are meant to have your vested interests at heart, but also because a doctor is legally not setup to administer treatment without receiving input from other sources legally.
Also, it’s important to remember that a doctor’s duty is to preserve life wherever possible. This includes potentially preserving your life beyond what you as a person would feel OK with.
If you have an idea of what quality of life means in relation to how invasive and supportive treatments can be of the length of your life, an advance care plan is a must. Making sure your wishes are articulated and respected as well as legally applied to your care happens best when directed by advance care documentation.
My family should make those decisions
Yes, in some circumstances, families may know how you would proceed. However, there are also a lot of other ways you family could really have no clue what you would decide. And this is especially true of difficult, complex and ‘lose-lose’ style moments.
Advance care planning helps protect your loved ones from the pain of complex and heartbreaking decisions. Resistance to advance care planning places them in the position of making decisions they may not always feel qualified to make.
By assuming your family has your best interests at heart, you’re often asking them to go above and beyond what is reasonable in a given relationship. The people that love us and know us the best hurt the most keenly when agonising over the sorts of decisions advance care plans cover.
Families often fracture under the weight of the constant barrage of decisions and/or heavy nature of the decisions that need to be made.
Think about it- advance care plans come into play when you have lost the ability to speak for yourself. That means you’ve had an accident, injury, illness or disease that has fundamentally altered who you are as a person.
Providing a roadmap of how to navigate that moment helps ensure your loved ones aren’t stretched even further when the chips are already down. Especially seeing they have to live with the impact and emotional toll of any decisions they may question or second guess later.
Advance care planning is your right
Don’t be the person who passively participates in the later stages of their care and life. Now is the time for you to grab the mic and tell the world what it looks like to you.