Advance Planning for Healthcare
Getting the Legal Work Done
Most of us are comfortable with making plans. On a daily basis, we plan our work schedules, household tasks, and weekend activities. On a larger scale, we plan our weddings, vacations, and retirements. The one area we tend to avoid planning for is the end of life. Yet, if we don’t plan in advance, if we don’t at least think about it and share our ideas with those we love, chances are we may become too ill or incapacitated to express our desires when the end is near.
For caregivers, advance planning for illness or the end of life can be particularly challenging. It’s not easy to face the possibility that your family member may someday become incapacitated. Accepting this possibility means asking your loved some tough questions, such as: Who will make decisions about your health and welfare should you be unable to? Are there any circumstances in which you would not want aggressive medical treatments to prolong your life?
Because so many legal and ethical problems have arisen from people not clarifying the answers to these questions, all U.S. states now have laws that help us document and protect our wishes in advance. For healthcare issues, the documents are called advance directives.
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“People often come to my office wanting only to draw up a will. I point out that if they’re concerned about what happens to their body and money after they go, shouldn’t they also be concerned about what happens to their body and money while they are still alive?”
—Jane McCormmach |
Having the proper legal documents can help ensure that a person’s wishes are respected and carried out. Advance planning can also prevent confusion in a time of great stress, and provide peace of mind to caregivers as well as their loved ones.
The task can seem daunting, and no one wants to think about mortality and life support. But many problems can arise if you or your family member becomes incapacitated without a legally binding statement of your wishes in place.
- Family members may disagree about who is in charge.
- Every medical decision can be a source of anguish and conflict between family members.
- Healthcare providers may balk at certain instructions if they haven’t been provided for in writing. This is especially true of withholding life-sustaining treatments, like resuscitation, the use of ventilators, and artificially administered nutrition.
- Doctors and hospitals may have more legal rights than caregivers, even if caregivers are carrying out an oral or implied request of a loved one.
- Caregivers may be forced to go through a costly and stressful court proceeding to seek legal guardianship of a family member.
These problems can all be avoided by making some medical and financial decisions in advance and completing the proper legal paperwork.
| Legal Tip |
| “People ask me, ‘When should I start thinking about putting together an advance directive?’ And I say, ‘When you’re alive.’ And by that I mean, right now.” –Jane McCormmach |
Getting Started Advance planning begins with a broader conversation about personal values and beliefs concerning the quality of life, healthcare, finances, and relationships.
Care Companion’s Advance Planning Tool Kit offers a guide to this important conversation.
Plan Together
It’s a good idea for everyone to have an advance directive, not just a person who is facing a terminal illness. Answering the questions together in
Care Companion’s Advance Planning Tool Kit can lead to feelings of closeness and mutual support. Once you and your loved one have gone through the question-and-answer stage, creating the proper legal documents can also be less daunting if you do it together.
Consulting with an Attorney
While it’s not essential, working with an attorney who specializes in estate planning or elder law will help you navigate the maze of local, state, and federal laws, and ensure that the documents accurately and legally represent you and your family member’s wishes. Even a small mistake can lead to problems down the road.
See here for resources on finding legal assistance.
Making Changes
It may ease some of your worries about the process to know that legal decisions made now can always be changed in the future, as long as your loved one is mentally competent. For instance, he may change his mind about who might best handle his finances. Or, he may decide that his concerns about pain relief are less important than being alert enough to visit with friends and family members. Consider advance planning an ongoing conversation rather than a one-time discussion. Keep in mind that, whenever possible, changes to advance directives should be made in writing.
State Regulations
Guardianships
In the absence of an advance directive and financial power of attorney, the only way you can help your incapacitated loved one manage his or her medical and financial matters is to seek a
guardianship from the courts (or
conservatorship, in some states). The process is costly and time consuming, and in the end, the court chooses who will get the job if several people are vying for it. Or, the court may decide that no one among those vying are adequate. But because a guardianship is court-supervised, it’s less likely to be abused than a durable power of attorney. For more information, see the section on
financial power of attorney.
What is an Advance Directive for Healthcare?
Most states define an advance directive as two legal documents, described below.
Durable Power of Attorney for Health Care
- In different states may be called an assignment of health care agent or proxy.
- Authorizes another person to make healthcare decisions for the patient should the patient be unable to make them, due to illness or injury.
- May apply at any time, not just at the end of life.
Living Will
- In different states may be called a health care declaration, instruction directive, or wishes for terminal illness.
- Gives specific instructions for applying, withholding, and/or withdrawing life-sustaining treatments.
- Does not name a healthcare proxy.
- Usually applies only in cases of terminal or vegetative diagnosis.
The traditional living will and durable power of attorney for health care may sometimes be combined into one comprehensive advance directive document. Before making such a document, it’s best to consult with an attorney and
review the laws for your state. See the
American Bar Association.
Besides the legal documents listed above, healthcare providers may require additional medical documents on file that permit or decline life-sustaining treatments, including the following.
- Do-Not-Resuscitate (DNR) Order
A written order that directs medical personnel not to attempt life-saving measures in the case of loss of circulation (heart and/or breathing stopped).
- Physician’s Orders Forms
A class of form, which can vary by state, giving more detailed instructions for life-sustaining procedures besides resuscitation, such as antibiotics, breathing assistance, and nutrition assistance.
- No Code Order
A specific kind of DNR order posted in hospital rooms.
Like the advance directive legal documents, these forms also vary from state to state. To avoid last-minute surprises, check with your family member’s doctors and hospital for the forms they will need on hand.
Living Will
What has traditionally been called a living will is a legal document that states a person’s wishes for life-sustaining treatments in the case of a terminal or vegetative diagnosis, as determined by two doctors. Depending on the state involved, the document may be called a health care declaration, instruction directive, or wishes for terminal illness.
When It Takes Effect
The living will takes effect when a person loses the ability to give informed consent to medical care due to unconsciousness or other mental impairment. In general, written assessments by two doctors are required to establish
incompetence. Incompetence is a separate determination from the terminal diagnosis.
How It Works
If no healthcare proxy has been assigned, doctors will use the living will instructions to make treatment decisions, usually in conference with family members if they are available. If the patient has assigned a proxy, that person uses the living will instructions to make healthcare decisions for the patient, in conference with doctors.
What It Says
The living will documents the patient’s wishes, usually including the following.
- When to apply, withhold, and/or withdraw life-sustaining procedures, including fluids, nutrition, antibiotics, oxygen, and breathing assistance.
- The conditions under which to remove certain treatments; for example, if the patient is unlikely to recover or is permanently unconscious.
- The conditions when certain treatments should always be applied.
- When to allow or disallow CPR and other heroic resuscitation procedures.
- Instructions on pain alleviation.
- Whether the patient is to be in the hospital, at home, in hospice, or in some other place at the end of life.
- In some states, instructions about pre-funeral dispensation of remains--for example, organ donation or autopsy.
| Legal Tip |
| “If the advance directive specifically includes options to accept and/or decline life support under certain conditions, as well as to discontinue life support under certain conditions, the healthcare representative will have more flexibility to fulfill the patient’s wishes in most situations.” –Jane McCormmach |
Preparing a Living Will
In order to write specific instructions for life-sustaining treatments, your loved one will need to consider his feelings about medical interventions when death is imminent. Talking things over with family, physicians, and an attorney specializing in elder law can help end-of-life wishes be expressed clearly and legally. The CareCommunity Toolkit offers some questions and reflections to
consider when preparing a living will.
| Legal Tip |
| “I suggest consulting with an attorney when making advance directive decisions and documents, especially if you are a member of a blended family (children from a past marriage) or you’re in a same-sex couple, as these are most often the situations where healthcare representatives and treatment choices are challenged.” –Jane McCormmach |
Durable Power of Attorney for Healthcare
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“As the population grows older and more people with disabilities are living longer, there will be more individuals who can’t make healthcare decisions for themselves, like Terri Schiavo. Being a proxy is one of society’s most challenging jobs, but it can also be a profound act of love. Individuals serving in that role deserve all the help they can get.”
—Charles P. Sabatino, Director, American Bar Assoc. Commission on Law and Aging |
This legal document, which is sometimes called an Appointment for Health Care Agent or Representative or Proxy, selects another person to make decisions about healthcare, including life support, should the patient become unable to make them. In a few states the authority applies only in the case of terminal illness, while in most states it is not limited to end-of-life situations.
When It Takes Effect
The health care proxy is called upon only if the patient is unable to make decisions about treatment due to unconsciousness or other disability. The legal term for this condition is incompetence, and in general, it must be established in writing by one or more doctors. It may be a temporary state, and decision-making powers may afterward be returned to the patient, or it may extend through the end of life.
| Legal Tip: The HIPAA Medical Records Double-Bind |
| “Sometimes a doctor may need access to the patient’s medical records to make a determination of mental competence, but the federal medical records privacy law (HIPAA) may prohibit certain transfers of your records. To avoid this, Durable Power of Attorney (DPA) healthcare documents can have a provision that takes effect immediately upon signing that allows the proxy to release medical records, even if incompetence has not yet been determined.” –Jane McCormmach |
Authority Given to a Healthcare Proxy
The DPA healthcare document authorizes the proxy to make medical decisions for the patient, as if the proxy were the patient. Depending on the specific language in the document, it can grant the following powers to a proxy.
- Power to accept, withdraw, and/or withhold treatments, including life support, based on the wishes stated in the advance directive.
- Power to make healthcare decisions not specifically mentioned in the advance care directive, but which the proxy determines would comply with the patient’s wishes.
- Power to sign medical forms relating to resuscitation procedures.
- Power to review and transfer medical records.
- Power to make decisions regarding disposition of remains after death, in particular organ donation and autopsy.
Adding the Living Will
Some attorneys recommend that the living will and the DPA healthcare be combined into a single comprehensive document. In this case, specific instructions for life-sustaining treatments are listed in the DPA healthcare document. The categories and language used for the instructions are the same as for a living will.
| Legal Tip |
| “Some DPA healthcare or living will instructions (for example those drawn up by doctors for themselves) can be so detailed and technical that only a doctor could understand them. But to avoid miscommunication, state the central end-of-life instructions in your own words. Under what conditions, if any, would I want life-sustaining treatments and/or life support discontinued? If the attending physician says I’m likely to die soon? If I’m in a vegetative state or coma? In a coma for how long? Etc.” –Jane McCormmach |
Choosing a Healthcare Proxy
When your loved one names a healthcare proxy, he is literally, under certain conditions, putting his life in the proxy’s hands. It’s important that your loved one choose someone that he fully trusts to honor his wishes.
It’s best to select a single healthcare proxy, to avoid conflicts down the road. There should also be at least one backup person named, should the first choice be unable to serve.
Becoming a Healthcare Proxy
Making such weighty decisions for another person is not easy. Are you prepared to take on the responsibility when the time comes? No matter how specifically your loved one’s wishes are conveyed in writing, it’s impossible to provide for every medical eventuality in advance. The more clearly your family member communicates his wishes to you beforehand, the more confident you’ll be to act in his best interest. Some issues you might want to discuss to help both of you feel more prepared can be found in the
CareCommunity Tool Kit.
Making Your Documents Legal
Organizing Your Documents
The original advance directive documents should be filed in a place accessible to both the patient and their healthcare proxy.
Copies should be filed with attorneys, backup proxies, care providers, hospitals (including doctor and nursing stations), nursing home, assisted living, hospice, etc., as applicable.
A public registry for living wills can be found
here.
This is a free service that downloads living will documents to healthcare providers who subscribe to the service.
Making Changes
Whenever possible, changes should be made in writing and the new documents signed properly and filed. Oral changes may be accepted if the patient is determined by a doctor to be mentally competent at the time of the change.
Additional Medical Forms
The instructions in a living will or DPA healthcare may not apply in some medical crises. Doctors, nurses, and emergency medical technicians (paramedics) will do everything they can to save a patient, including CPR, intubation, ventilation, and artificial nutrition, unless instructions saying otherwise have been given in writing.
As with advance directives, the medical forms for resuscitation and life support vary state to state. Check with your loved one’s hospital, physicians, and local EMT or fire department to make sure the correct forms are filed.
Do-Not-Resuscitate Orders
Without a written order, doctors, nurses, and EMTs will attempt resuscitation of someone whose heart or breathing has stopped. This may include the following procedures.
- Cardiopulmonary resuscitation (CPR), which includes breathing assistance and/or manual chest compression.
- Electric shock defibrillation.
- Injection of medications such as adrenaline.
A do-not-resuscitate (DNR) order states that the patient wishes to be allowed to die naturally without attempt at resuscitation. To honor such wishes, a healthcare provider is legally required to have a special form filled out and signed by the patient or the patient’s health-care proxy. Some states now require a more comprehensive Physician’s Orders form specifying wishes for life-sustaining treatments, including resuscitation.
Filing and Posting DNR Orders
As with other advance directives, state requirements on DNR orders vary. Check with healthcare providers, the hospital and the fire department for details. Typically, DNR orders are filed and/or posted in the following places.
- On file with healthcare providers, hospital, nursing home, or assisted living facility.
- When checked in to a hospital, they are included in the medical chart and/or posted at the end of the bed. These types of DNR orders are sometimes referred to by the hospital staff as No Code Orders.
- At home, posted on the refrigerator or on the back of the bedroom door.
- On a bracelet or pendant the patient wears at all times.
Physician’s Orders Forms
These also vary from state to state and may be required instead of (or in addition to) a DNR order, when a patient is checked into a hospital, nursing home, or assisted living facility. They contain more detailed instructions for life-sustaining treatment in the case of a medical crisis, and typically include the following.
- Resuscitation wishes.
- Degree of medical intervention someone prefers, from comfort measures only to full treatment (intubation, mechanical ventilation, etc.).
- Preferences concerning the use of antibiotics.
- Preferences concerning artificially administered nutrition.
Making Decisions about CPR
Making Changes to DNR Orders and Physician’s Orders
A living will document can be fairly flexible, allowing for different treatment options given a patient’s changing conditions. For example, the patient may wish to receive CPR only when there is still hope of restoring some quality of life. By contrast, the instructions that appear in DNR orders and Physician’s Orders are unconditional. If a person’s wishes change, or be conditional at certain stages of illness, new forms reflecting those changes should be filed with healthcare providers.
Glossary
Antibiotics: Drugs used to kill or slow the growth of bacteria that cause infections. Infections such as pneumonia are common in the late stages of a terminal illness; using antibiotics to treat them often prolongs the life of the dying patient.
Artificial nutrition and hydration (feeding tube): Feeding tubes are used to deliver nutrition and fluids to patients who have lost the ability to swallow. The tube either goes into the stomach through the nose and throat, or is surgically placed in the wall of the stomach. Feeding tubes may be used to sustain the patient until he recovers the ability to swallow, or they can be used to prolong life for those who may never recover.
Cardiopulmonary resuscitation (CPR): CPR is used to resuscitate a patient whose breathing and/or heart has stopped. It involves vigorous pressing on the chest, mouth-to-mouth or ventilator artificial breathing, electrical shock to the chest, and medications applied into a vein. The success rate for CPR depends on many factors: overall health, age, where it’s given (e.g., home or hospital), and how quickly it’s applied. The success rate is 25%-50% for people under 65 who are in good health. Over age 65, the rate drops to 1%-4%. CPR is rarely successful in patients with chronic illnesses that affect vital organs. Less than 10 out of 100 hospitalized patients respond to CPR by returning to the state they were in before their heart stopped.
Chemotherapy: A type of cancer treatment that uses chemicals to kill cancer cells. The chemicals are administered orally or through the vein. Damage to healthy cells may also occur, which can cause side effects such as fatigue, pain, nausea, vomiting, constipation, hair loss, loss of appetite, and temporary or permanent kidney damage. The type and severity of side effects depend on the drug being taken, how much is used, how long it is taken, and the patient’s overall health. The treatment may be prescribed with the intent of curing the cancer or as a palliative measure to make a terminally ill patient more comfortable. In the latter case, the side effects may cause more discomfort than the illness.
Coma: Coma is a state of unconsciousness that persists for some time. The patient looks asleep, but does not respond to stimulation. Coma can be caused by a head injury, severe stroke, or severe illness. Coma patients are usually cared for in hospitals or nursing homes, because all of their care must be done by others, including tube feeding, hygiene care, and being turned to prevent bedsores. People who come out of a coma generally report no memory of any awareness during the coma, including that of pain or discomfort. If and when a person comes out of a coma depends on many factors, including age, what caused the coma, overall health, and the “stage” of the coma (lighter stages have a better chance of coming out than deeper stages).
Kidney dialysis: Dialysis is a process used for patients whose kidneys stop functioning. In a session lasting about four hours, blood is removed from a vein, circulated outside the body into a machine that removes waste products, and returned to another vein. Dialysis allows people who have kidney disease to live a near-normal life, though it doesn’t do as good a job as a healthy kidney, and dialysis patients may not feel well at times. If the patient has another serious illness involving the lungs, liver, or heart, dialysis may be complicated by problems regulating body fluids and waste products.
Life-sustaining treatments: Medical treatments and procedures used to keep a patient alive who would otherwise die without them, including CPR, breathing machines, feeding tubes, antibiotics, and dialysis.
Mechanical ventilator (breathing machine): A medical device that takes over breathing for a patient who is unable to breathe on his own. A breathing tube is inserted into the windpipe through the mouth, nose, or an incision at the base of the neck. Use of a ventilator makes it difficult or impossible to speak, and requires that the patient be either bedridden or confined to a wheelchair (a paralyzed patient usually uses a portable ventilator). A ventilator may be used on a short-term basis to help a patient recover from an injury or illness, or it may be used indefinitely to prolong or sustain the life of a patient who may never recover.
Radiation therapy: A type of cancer treatment that uses high-energy radiation from X-rays and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body or from radioactive materials (isotopes) placed inside the body in the area of the cancer cells. Since radiation is a local treatment, side effects are usually confined to the area being treated. The early effects of radiation may be seen a few days or weeks after treatments have started and may continue for several weeks after treatments are completed. They include skin irritation and rash, soreness, fatigue, and hair loss, and localized problems like vomiting, nausea, constipation, loss of appetite, coughing, shortness of breath, sore throat, and trouble swallowing. As with chemotherapy, radiation may be prescribed with the intent of curing the cancer, or as a palliative measure to make a terminally ill patient more comfortable. In the latter case, the side effects may cause more discomfort than the illness.
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Expert Consultant |
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Seattle-based Jane McCormmach has practiced law for 30 years, specializing in estate law and probate. She was named to Washington Law and Politics magazine’s “super lawyers list” (top 5%) in her field in Washington state, and also made the magazine’s list of the 50 best woman attorneys in the state in any specialty. |
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