Advance Directives |
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Thinking through the healthcare decisions you want made for you if you’re unable to make them yourself probably isn’t the most enjoyable way to spend a few afternoons. But it’s critically important – both to ensure that you get the treatment you want, and to eliminate the burden from family members who may be called upon to make major medical decisions on your behalf based on what they think you would decide if you could.
Whether from end of life or emergencies, people every day are faced with medical treatment options for which they cannot communicate a preference. Yet a Pew Research Survey found that only 29% of Americans had any kind of written advance directives. And while another survey found that 60% of respondents didn’t want to burden their families with having to make end-of-life decisions, 56% had not discussed their end-of-life wishes with family members. That’s just not a great solution. As illustrated in an article in the New York Times,
"If a terminally ill parent lands in a hospital and daughter A tells the staff no, no feeding tube, will daughter B accuse her of killing their mother? If daughter B tells the staff to go ahead and turn on a respirator, will son C argue that no, after the Terry Schiavo case in Florida, their mother declared she never wanted to be kept alive by machines? Sometimes, a hospital ethics committee has to get involved. Sometimes, courts and lawyers do. “It gets so emotional,” said Ronda Hughes, co-author of the A.H.R.Q. report. A onetime cardiac critical care nurse in Boston, she’s seen “people crying, screaming, threatening. When you’re faced with those decisions, you can’t say, ‘Let me get back to you in a week,' she said".
You don’t need an attorney to create basic advance directives and you can modify them at any time. Our recommendation - do yourself and your family a favor and think through in advance how you would like to manage your health care when you aren’t able to make your wishes known.
Why They're So Important
Unfortunately, the decision isn’t as simple as deciding that you either want “everything” done or “no heroic measures.” When specific questions come up, healthcare providers need answers, often within hours, and vague instructions are insufficient to ensure that family members are comfortable with the decisions they make.
Let’s take an example of someone who said they wanted “no heroic measures” taken. Which of the following falls within that category?
The bottom line – there are so many variables in real-life situations that it’s hard to make a specific care decision based on a vague instruction.
Whether from end of life or emergencies, people every day are faced with medical treatment options for which they cannot communicate a preference. Yet a Pew Research Survey found that only 29% of Americans had any kind of written advance directives. And while another survey found that 60% of respondents didn’t want to burden their families with having to make end-of-life decisions, 56% had not discussed their end-of-life wishes with family members. That’s just not a great solution. As illustrated in an article in the New York Times,
"If a terminally ill parent lands in a hospital and daughter A tells the staff no, no feeding tube, will daughter B accuse her of killing their mother? If daughter B tells the staff to go ahead and turn on a respirator, will son C argue that no, after the Terry Schiavo case in Florida, their mother declared she never wanted to be kept alive by machines? Sometimes, a hospital ethics committee has to get involved. Sometimes, courts and lawyers do. “It gets so emotional,” said Ronda Hughes, co-author of the A.H.R.Q. report. A onetime cardiac critical care nurse in Boston, she’s seen “people crying, screaming, threatening. When you’re faced with those decisions, you can’t say, ‘Let me get back to you in a week,' she said".
You don’t need an attorney to create basic advance directives and you can modify them at any time. Our recommendation - do yourself and your family a favor and think through in advance how you would like to manage your health care when you aren’t able to make your wishes known.
Why They're So Important
Unfortunately, the decision isn’t as simple as deciding that you either want “everything” done or “no heroic measures.” When specific questions come up, healthcare providers need answers, often within hours, and vague instructions are insufficient to ensure that family members are comfortable with the decisions they make.
Let’s take an example of someone who said they wanted “no heroic measures” taken. Which of the following falls within that category?
- Use of a ventilator to aid breathing. The ventilator tube inserted in the patient’s throat is uncomfortable so it’s usually employed in conjunction with sedation. As an alternative, a tracheotomy isn’t painful, but patients who undergo that procedure aren’t able to speak as long as the tube is in place.
- Artificial nutrition through a breathing tube or artificial hydration through intravenous fluids. These measures can be helpful for patients recovering from an illness. But studies have shown that artificial nutrition does not meaningfully prolong life and my actually be harmful if a dying body cannot process the nutrition properly.
- CPR. This proven technique to restore a normal heartbeat involves pushing hard on the chest. CPR can often restore the heartbeat of a young healthy person. CPR can help older patients, but often does not succeed in older people, and the procedure itself can result in broken ribs and a collapsed lung.
The bottom line – there are so many variables in real-life situations that it’s hard to make a specific care decision based on a vague instruction.
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Watch Now - What are advance directives? A video from NIH explaining common advance planning documents.
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Advance Planning Documents
There are three basic documents used in advance planning:
Getting Started
Don’t forget, this is all about what you want. While creating a living will is important, far more important is having the open discussions you need with family members and with your health care provider to talk through the things that matter to you most. The goal of the effort should be a shared understanding.
Conversation Project
There are three basic documents used in advance planning:
- Living Will – A living will is a written document signed by you that helps you tell doctors how you want to be treated if you are dying or unconscious and cannot make your own decisions about treatment.
- Durable Health Care Power of Attorney - This document gives the right to someone else to make medical decisions for you if you are unable to make them yourself. Having a durable power of attorney helps plan for unforeseen situations that may not be covered in your living will.
- Do Not Resuscitate Order – An optional DNR order instructs health care providers not to provide CPR or other life support procedures if your heart stops or if you stop breathing.
Getting Started
Don’t forget, this is all about what you want. While creating a living will is important, far more important is having the open discussions you need with family members and with your health care provider to talk through the things that matter to you most. The goal of the effort should be a shared understanding.
Conversation Project
A terrific place to start is the Conversation Project – a non-profit organization that provides downloadable kits that can help you have these conversations with family members and health care providers.
The Conversation Starter Kit will help you get your thoughts together and provide a basis for the conversations you’d like to have.
Maryland Advance Directive and Health Care Power of Attorney Forms
The state of Maryland has created advance directive and durable power of attorney forms that you can download and fill out. These documents come with instructions and guidance. If you decide to create an advance directive, make copies and give them to family members and your doctor.
Maryland Medical Orders for Life-Sustaining Treatment (MOLST) Form
While not an advance directive, MOLST forms are important to understand. The Maryland MOLST form was developed by a task force made up of more than 70 Maryland organizations, facilities, providers, and consumers, and is filled out by a health care worker in consultation with newly admitted patients during the admission process in all assisted living programs, home health agencies, hospices, kidney dialysis centers, and nursing homes. Hospitals are also required to complete MOLST forms when they transfer patients to the care of another hospital or an assisted living program, hospice, kidney dialysis center, home health agency or nursing home. The MOLST form becomes a part of your medical record and follows you.
MOLST forms are medical documents that contain actionable medical orders effective immediately based on your current medical condition, and can be signed by you or your representative (if you are incapable of making your wishes known). They can be modified or updated at any time.
In contrast, advance directives are documents that contain treatment preferences that will apply sometime in the future. Advance directives give you the opportunity to make choices that you want applied if needed and in the event that you later lose the capacity to make those choices. If, for example, you are admitted to a hospital and you are unable to express your wishes for treatment, a family member or the person named in your health care power of attorney can use the instructions in your living will to fill out the MOLST form.
Drs. Pierce and Afrookteh
You can also schedule an appointment with Dr. Pierce or Dr. Afrookteh to get the conversation started.
The state of Maryland has created advance directive and durable power of attorney forms that you can download and fill out. These documents come with instructions and guidance. If you decide to create an advance directive, make copies and give them to family members and your doctor.
Maryland Medical Orders for Life-Sustaining Treatment (MOLST) Form
While not an advance directive, MOLST forms are important to understand. The Maryland MOLST form was developed by a task force made up of more than 70 Maryland organizations, facilities, providers, and consumers, and is filled out by a health care worker in consultation with newly admitted patients during the admission process in all assisted living programs, home health agencies, hospices, kidney dialysis centers, and nursing homes. Hospitals are also required to complete MOLST forms when they transfer patients to the care of another hospital or an assisted living program, hospice, kidney dialysis center, home health agency or nursing home. The MOLST form becomes a part of your medical record and follows you.
MOLST forms are medical documents that contain actionable medical orders effective immediately based on your current medical condition, and can be signed by you or your representative (if you are incapable of making your wishes known). They can be modified or updated at any time.
In contrast, advance directives are documents that contain treatment preferences that will apply sometime in the future. Advance directives give you the opportunity to make choices that you want applied if needed and in the event that you later lose the capacity to make those choices. If, for example, you are admitted to a hospital and you are unable to express your wishes for treatment, a family member or the person named in your health care power of attorney can use the instructions in your living will to fill out the MOLST form.
Drs. Pierce and Afrookteh
You can also schedule an appointment with Dr. Pierce or Dr. Afrookteh to get the conversation started.
Other Resources and Articles
Maryland Medical Orders for Life-Sustaining Treatment (MOLST) Project
Task-force developed form that you or your representative fills out each time you are admitted to certain health-care facilities. It is placed in your medical record and is available to your health care providers. The MOLST website also provides resources for patients and physicians.
Mayo Clinic: Living Wills and Advance Directives
General information about advance directives.
National Institute on Aging
Comprehensive resources from the National Institutes of Health around the importance of and process for developing advance directives.
Why do we Avoid Advance Directives? New York Times, April 20, 2009
Maryland Medical Orders for Life-Sustaining Treatment (MOLST) Project
Task-force developed form that you or your representative fills out each time you are admitted to certain health-care facilities. It is placed in your medical record and is available to your health care providers. The MOLST website also provides resources for patients and physicians.
Mayo Clinic: Living Wills and Advance Directives
General information about advance directives.
National Institute on Aging
Comprehensive resources from the National Institutes of Health around the importance of and process for developing advance directives.
Why do we Avoid Advance Directives? New York Times, April 20, 2009