What are end-of-life decisions?
End-of-life decisions are those you can make
now about how you wish to be cared for and treated when you are dying. End-of-life decisions can include whether to accept or refuse treatments that might prolong your life. An advance directive is one way to let others know about your decisions based on your values and priorities.
It’s important that those close to you fully understand what you want at this time
,
so it is as easy as possible for them to carry out your wishes.
You can read more in
End of Life Care
.
What is a terminal condition?
A terminal condition or illness is
one
that is life-limiting. In the near future
it is expected the illness
will result in
permanent unconsciousness from which the person is unlikely to recover
or death.
Examples of terminal conditions may include but are not limited to
advanced cancers,
multiple organ failure
, or some massive heart attacks
and strokes. Definitions of terminal illness can be different from state to state
.
What is life-sustaining treatment?
In most cases
,
life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores that would prolong the dying process for a terminally ill patient.
These may include but are not limited to:
- CPR (cardiopulmonary resuscitation) including use of an AED (automated external defibrillator)
- Breathing machines
- Medications such as antibiotics
- Nutrition and hydration (food and liquids) given through feeding tubes or IVs
Comfort measures, which are medicines or procedures used to provide comfort or ease pain, are not usually considered life-sustaining. In some states, tube feedings and IV fluids are considered comfort measures. States have different definitions, so be sure you know what your state says.
When should I make an advance directive?
The best time to make an advance directive is before you need one. In other words, before you become too sick to make your own decisions about what medical care you want to get or refuse.
See Making Decisions for Your Advance Directive.
How will my doctor know that I have an advance directive?
If you have any type of advance directive, let your health care team know and make sure they have it in their records. You may also tell people close to you that you have it and where it’s kept. Give copies of your advance directive to your proxy or agent, family members, and friends who would be contacted if you become seriously ill.
Does the doctor have to follow my advance directive?
Even though advance directives are legally recognized documents, there are times that a health care provider may reject a medical decision made by you or your health care proxy based on your advance directive.
For example:
- When the decision goes against the individual health care provider’s conscience.
- When the decision is against the health care institution’s policy.
- If the decision violates accepted health care standards.
In such cases, the health care provider or facility must tell you right away. Your health care provider or institution may help you be transferred to another facility that will honor your decisions.
To avoid these situations, it may be beneficial for you to discuss your wishes and values with your health care provider ahead of time and document them. This will help make sure your health care team is clear about what you want and is willing to support your wishes. This will also help make sure that your wishes are within the institution’s health care standards.
Will my advance directive be used if I am taken to the emergency room?
Your advance directive is
valid in an emergency room only if the health care providers there know about it. In serious emergency situations, it may not be possible for health care workers to know that you have an advance directive before emergency medical care is given. If you have specific wishes that you would like to be carried out in case you have an emergency, you may talk to your health care team about filling out a
physician orders for life sustaining treatment (
POLST
)
form
.
What happens if I don't have an advance directive?
If you don’t have an advance directive and become unable to make medical decisions by yourself, you could be given medical care that you would not have wanted. If there’s no advance directive, the doctor may ask your family about your treatment.
Some states have passed family agency acts that choose which family members (listed in order of priority) may act on behalf of a patient if you don’t have an advance directive. But some states do not have laws that require health care providers to check with family members. Family members (especially those who aren’t close to you) might not know what you would want. Family members might also disagree on certain aspects of your care, which may cause delays or lead to you not getting the care you might have wanted. Sometimes, the courts can appoint a surrogate or proxy. This is someone a judge chooses to make decisions for you if you become unable to make decisions for yourself.
Do I need a lawyer to write my advance directive?
A lawyer can be helpful, but most people don’t need one to write
an
advance directive. Some states have forms you must use, and all states have certain requirements. Talk to your health care team, as they may
be able to
help you write your advance directive. Sample forms and directives that meet your state’s requirements may also be available.
Can I have an advance directive in more than one state?
Most states have their own rules about what’s recognized as a valid advance directive. Some states recognize an out-of-state directive if it meets the legal requirements of the state in which you want to use it. If you want to use an advance directive in a state other than that in which you signed it, or if you want to have an advance directive in more than one state, it’s a good idea to check with a lawyer in order to avoid
any
problems.
Does having an advance directive affect the quality of the health care I receive?
No, having or not having an advance directive
will
not affect the quality of health care you receive while you can make your own medical decisions. Your health care team will only use you
r
advance directive to guide medical decisions when you are unable to make decisions for yourself. For a living will to be used, two physicians must confirm that you are unable to make medical decisions for yourself. They must also confirm that you are in a medical condition defined by your state law as
a
terminal illness
or
permanent unconsciousness
.
Can I have both a living will and a durable power of attorney for health care
?
Yes, you can have both a living will and a durable power of attorney for health care at the same time. A
durable power of attorney
is used when you are unable to make your health care decisions. In this case, the person you selected to be your health care agent (proxy) will make all of your health care decisions after your physician certifies that you can't make your own medical decisions. A living will
is
only
use
d
after two physicians confirm that you are unable to make medical decisions for yourself, and that you are in a medical condition defined by your states law as
terminal illness
or
permanent unconsciousness
. If you have both these documents, it is important to make sure they don't conflict with each other so that there will be no confusion about your wishes if you can't speak for yourself.
Can I change my mind about
my advance directive
instructions
?
Yes, you can change your mind at any time about what's written in your advance directive. You can also revoke
it (take it back)
at any time. It is recommended that you review your advance directive every so often to make sure your wishes are still the same. For example, if you have a major health change,
a major family change like a divorce, if something happens to your health care proxy (agent) or they become unwilling to be your proxy, or if an
existing health condition or illness gets worse. If you change or cancel your advance directive, be sure to let your health care team, loved ones, and your health care proxy (agent) know and also replace any advance directive copies you may have given them with the new one. This will help to ensure that there is no confusion if you are unable to make your own decisions.
Is my advance directive valid if I'm at home?
It may be difficult to honor an advance directive in the event of an emergency while at home. EMS (Emergency Medical Service) teams are required to try to revive and prolong life in every way they can. Some states allow EMS teams to not resuscitate patients who may have valid
DNR or POLST forms at home. If DNR
or POLST
forms are honored in your state, speak with your health care provider about getting these forms filled and signed to reflect your wishes in case of an emergency at home. Your health care provider may also be able to help you get a wallet card, bracelet, or other DNR documents to keep when you are at home or not in the hospital
.