In a kinder, easier, more foolproof world, there would be one document allowing people to indicate what medical care they prefer to have provided or withheld. And it would be housed in one repository, accessible by medical personnel anywhere and everywhere, at any hour of the day or night.
We don’t live in that world. State legislators, listening to lobbyists with varying interests, jealously guard how and when residents can control their medical care — often imposing specific forms and requirements for finalizing them.
In general, there are four legal documents that can help ensure you get the medical care you want:
- Advance Healthcare Directives — which includes Living Wills and Powers of Attorney for Healthcare
- Physician Orders for Life-Sustaining Treatment (POLST) Forms
- Do Not Resuscitate Orders, and
- Health Insurance Portability and Accountability Act (HIPAA) Privacy Authorization Waivers
Depending on where you live and your needs and wants, you may choose to complete all of these documents if you’re the belt and suspenders type. Or you may opt to complete none of them if you have no strong feelings about the type of medical care you receive. Most people, however, feel more assured completing and finalizing at least one of them.
A few tips and caveats before you decide:
Be consistent. If you opt to have more than one of these documents in place, make sure the directions in them don’t conflict. If they do, the resulting confusion may actually invalidate them, canceling the time and thought you put into making them.
Review periodically. The safest practice is to take another hard look at your documents at least yearly or when your wishes about your care or the people you want involved in it change.
Talk about it. Make your doctors aware of your both wishes and the other people — including close friends as well as family members — who may help make decisions about your care.
Advance Health Care Directives
“Advance directive” is the umbrella term given to one or more documents, depending on your state’s law, that allow you to:
- Name another person to oversee your medical care to be sure your wishes are enforced, and
- Instruct healthcare providers about what life-prolonging treatments and pain relief you want and don’t want if you cannot express those wishes.
Either a separate document or the section of the same document where you can name a person is often referred to as a “power of attorney for healthcare.” The person you appoint is a healthcare “agent” or “proxy.”
Your agent’s authority ends at your death, but in most states, you can also give your agent authority to make decisions about:
- tissue or body donation,
- autopsy, or
- direct remains.
Advance directives are usually enforced when a person is at their most vulnerable — either close to death or suffering from a terminal condition or in a permanent coma when they can’t give voice to their own wishes. Some people, however, opt to have advance directives take effect at once — especially if they fear the advances of dementia and wish to secure a healthcare advocate in their corner.
Where to get one. Download state-specific forms at CaringInfo.
Physician Orders for Treatment
All but four states — Alabama, Arkansas, the District of Columbia, and South Dakota — offer a type of medical order that allows individuals with serious illnesses or frailties to specify the medical treatments they would or would not want administered during a medical emergency.
In most states, this document is called a Physician Order for Life-Sustaining Treatment, or POLST, for shorthand. But such orders are also known by other names with varying tortured acronyms: Medical Orders for Life-Sustaining Treatment (MOLST), Medical Orders on Scope of Treatment (MOST), Physician’s Orders on Scope of Treatment (POST), and Transportable Physician Orders for Patient Preferences (TPOPP).
States that were early adopters of POLSTs, such as California and Oregon, at first specified they must be printed on bright pink paper so they could be easily spotted in a medical file—and other states followed suit. While many state forms still specify that bright pink is preferred, that distinguishing hue has proved to be a problem, as it cannot be easily read when photocopied.
What truly distinguishes this document from an advance directive is that after you specify the care desired, a medical practitioner—usually, a doctor, nurse practitioner or physician’s assistant—must also sign it to indicate that he or she is aware of your wishes. It then becomes part of your medical record. While POLSTs have not been in effect long — in most states, less than a decade — both consumer and medical groups agree that the most profound effect of the form is that it encourages doctors and patients to have an open acknowledgment and discussion about end-of-life care rather than ignoring its reality. In contrast, advance directives can but need not be acknowledged by a doctor.
POLST types of documents are best suited to patients who are considered “seriously ill” or have a life expectancy of a year or less. It allows them to have more control over their end-of-life medical treatment, especially extraordinary measures such as a ventilator, feeding tube and CPR, by specifying that such procedures be administered or withheld.
Ideally, the document will be enforced wherever the care is needed and administered — usually in a hospital or care facility. Extra cautious individuals, and those who travel and may not be near their regular doctor when care is needed, may want to take the extra step of wearing a bracelet or medallion indicating a POLST is in effect. (See the discussion below for more specifics.)
Where to get one. Most primary care physicians and specialists will be able to supply a form and help patients complete it so both can sign and it can take effect on the spot. You can also download one — but you may have to click around a bit — through the National POLST Paradigm.
Do Not Resuscitate (DNR) Order
Imagine the difficult but plausible scenario that you are on an errand or social outing and suddenly collapse or lose consciousness. What is likely is that a passerby who doesn’t know you or any wishes you might have will summon an ambulance or paramedics for help. Emergency responders who respond to the call must do their jobs by administering all medical procedures to revive the person at the scene.
These procedures may include:
- chest compressions or CPR,
- assisted ventilation for breathing,
- endotracheal intubation,
- defibrillation, and
- cardiotonic drugs to stimulate the heart.
People who feel strongly that they would not want to be resuscitated in such circumstances may want to complete a “Do Not Resuscitate Order,” sometimes called a “Pre-Hospital Do Not Resuscitate Order.”
This document instructs paramedics or EMTs to forgo resuscitation attempts if you stop breathing or your heart stops beating; all other types of care will still be administered. The individual directing the care and a doctor must both sign for it to be valid. As with a POLST, it is essential that medical responders can quickly be made aware that you have completed a DNR order, as mentioned below.
Where to get one. Consult a local doctor for help in finalizing a DNR order. For questions about DNRs, contact your state’s medical association.
Medical Bracelets and Medallions
The biggest problem in enforcing POLST and DNR orders is that medical providers may not know they exist. Many locales have specific requirements for communicating their existence, but the most common is for the maker to wear a bracelet or medallion. Approved bracelets and medallions for both POLSTs and DNRs are available from:
- MedicAlert Foundation
Prices range from $9.99 to $1,499.99 (for Large Executive 14k gold model)
- StickyJ Medical ID
Cost is $24.95
- Caring Advocates
Cost is $70
Health Insurance Portability and Accountability Act (HIPAA) Waiver
The Health Insurance Portability and Accountability Act, or HIPAA, was a well-intentioned law passed to protect the privacy of your healthcare information. But a surprising number of health care providers misuse or misunderstand it — refusing to divulge any medical information to anyone other than the patient, and claiming that HIPAA prevents them from doing so.
If you are visiting a doctor, you are free to indicate that a relative, friend or other person you identify has your consent to learn any health information that would normally be protected due to privacy concerns. In many cases, this is an essential help in making wise and informed decisions about medical care and procedures.
A specific consent form is not absolutely required, but a doctor or other healthcare provider must be completely certain that permission has been granted before releasing patient information. So written permission can help emphasize your wishes. And a completed waiver may be essential if a particular practitioner is less than cooperative.
Where to get one. Contact all the doctors’ offices and other medical providers you regularly visit and find out the procedures they follow and whether they provide a specific form. If your provider does not have a specific form, then download and fill out the HIPAA Privacy Authorization Form.