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How do decisions regarding my treatment get made as I get closer to the end of my life?

The key concept to keep in mind is that as long as you are mentally competent, you will be the one listening to your physician’s descriptions of their assessments of your condition and your treatment options, and then you decide what’s best for you. The rest of this chapter deals with situations where you are not mentally competent. Examples would be situations like being in a coma after a car accident, or being in the advanced stages of Alzheimer’s or dementia.

How treatment decisions get made close to the end of life

Scenario One (Best Case Scenario)

You decide your treatment.

When you’re mentally competent this works just as described for any other treatments earlier in this book; ideally, you will previously have established a collaborative relationship with your physician and they will understand you as a complete person, including your values and beliefs, so they can discuss treatment options that are personalized to your situation. If you find yourself working with a physician who doesn’t know you, it would still benefit you to start the relationship by making clear what values and beliefs will influence your decision making, and that you fully expect them to present you with objective options and to work with you collaboratively.

This is the best case since you choose from amongst your options.

 

Scenario Two

Your treatment is determined by your POLST, which you have defined in advance.

You’re not mentally competent, you have a chronic condition, you live in a state that recognizes Physician’s Order for Life Sustaining Treatment (POLST), you have a valid Physician’s Order for Life Sustaining Treatment on file and accessible to your providers, and your providers interpret your POLST to cover your desires relative to the specific situation at hand. Under this scenario you should receive treatment according to your desires as stated in the POLST. Neither your loved ones nor your providers are compelled to make decisions on your behalf.

This is a relatively good scenario in that your documented desires have been respected and your loved ones are not burdened with major treatment decisions.

 

Scenario Three

Your treatment is determined by your Living Will, Advance Directive, or Do Not Resuscitate Order, which you have defined in advance.

You’re not mentally competent, you do not have a POLST or your POLST is not being interpreted by your providers as specific enough for the situation at hand, but you do have a valid and accessible Living Will, Advanced Directive, or Do Not Resuscitate Order and your providers interpret it to cover your desires relative to the specific situation at hand. Under this scenario you should receive treatment according to your desires as stated in your LW, AD, or DNR. Neither your loved ones nor your providers are compelled to make decisions on your behalf.

This is a relatively good scenario in that your documented desires have been respected, and your loved ones are not burdened with major treatment decisions.

 

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“It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little.“

Ken Murray, MD, Clinical Assistant Professor of Family Medicine at USC, ‘How Doctors Die

Scenario Four

Your treatment is determined by your appointed Proxy.

You’re not mentally competent, you do not have either a POLST or a LW, AD, or DNR; or your POLST/LW/AD/DNR is not being interpreted by your providers as specific enough for the situation at hand, but you do have a valid and accessible Health Care Power of Attorney (or you’ve appointed a Proxy as part of your Advance Directive). Under this scenario your physicians should collaborate with your assigned Proxy and share their assessments and treatment options. Your Proxy would then make your treatment decisions.

The key in this scenario is the discussions you’ve had with your Proxy and other family members prior to losing your mental faculties; if you’ve made your desires clear enough that your Proxy has little doubt as to your desires, then they are more likely to follow your exact desires and less likely to be overly distressed. The less specific your desires were in your discussion, the more your Proxy will have to apply their own judgment; depending on your Proxy, they may be inclined to favor aggressive treatment, and may be more likely to be more emotionally distressed.  If you’ve made it clear to loved ones other than your Proxy that you and your Proxy have discussed your desires in detail, then it will be less likely that your Proxy will be second guessed by others.

 

Scenario Five

Your treatment is determined by your attending physician.

You’re not mentally competent, you have no POLST, LW, AD, or DNR, and you have no appointed Proxy. Or, you have a POLST, LW, AD, or DNR but they are not being interpreted by your providers as specific enough for the situation at hand. Under this scenario your physicians would decide your treatment options based on some combination of their hospital’s policies and their best judgment. Your loved ones may be consulted, but it would ultimately be your physicians’ decision.

Since the bias of most provider institutions is to do ‘everything possible’, this is the most likely scenario to lead to overly aggressive treatment options that result in unnecessary suffering.

 

Remember:  We coach, support, educate, and empower.  We illuminate options you may not have known you had.  But we don't decide what's right for you in your unique circumstances; only you can do that.  And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.