Advance directives: The term “advance directives” refers to treatment preferences and the designation of a surrogate decision-maker in the event that a person should become unable to make medical decisions on her or his own behalf.
Advance directives generally fall into three categories: living will, power of attorney, and health-care proxy.
Living will: This is a written document that specifies what types of medical treatment are desired should the individual become incapacitated. A living will can be general or very specific. The most common statement in a living will is to the effect that
if I suffer an incurable, irreversible illness, disease, or condition and my attending physician determines that my condition is terminal, I direct that life-sustaining measures that would serve only to prolong my dying be withheld or discontinued.
More specific living wills may include information regarding an individual’s desire for such services such as
- analgesia (pain relief),
- artificial (intravenous or IV) hydration,
- artificial feeding (feeding tube),
- CPR (cardiopulmonary resuscitation),
- life-support equipment including ventilators (breathing machines),
- do not resuscitate (DNR).
Health-care proxy: This is a legal document in which an individual designates another person to make health-care decisions if he or she is rendered incapable of making their wishes known. The health-care proxy has, in essence, the same rights to request or refuse treatment that the individual would have if capable of making and communicating decisions.
Durable power of attorney (DPOA): Through this type of advance directive, an individual executes legal documents that provide the power of attorney to others in the case of an incapacitating medical condition.
The durable power of attorney allows an individual to make bank transactions, sign social security checks, apply for disability, or simply write checks to pay the utility bill while an individual is medically incapacitated.
DPOA can also specifically designate different individuals to act on a person’s behalf for specific affairs.
For example, one person can be designated the DPOA of health-care or medical power of attorney, similar to the health-care proxy, while another individual can be made the legal DPOA.
What is the importance of an advance directive?
Advance directives were developed as a result of widespread concerns over patients undergoing unwanted medical treatments and procedures in effort to preserve life at any cost.
As outlined in the following section (history of advance directives), remarkable efforts were made to institute advance medical directives as a component of medical care in the United States over the last few decades.
From a practical standpoint, medical directives and living wills facilitate a person’s medical care and decision making in situations when they are temporarily or permanently unable make decisions or verbalize their decisions.
By having previously documented personal wishes and preferences, the family’s and physicians’ immense decision-making burden is lightened.
At the same time, patient autonomy and dignity are preserved by tailoring medical care based on one’s own choices regardless of mental or physical capacity.
Instructive directives (advance directives, living wills, and health-care proxy designation) are completed by a person with decision-making capacity.
They only become effective when a person loses his/her decision-making capacity (mentally incapacitated).
While a person maintains ability to make decisions, he/she is the ultimate decision-maker rather than the health-care proxy or surrogate decision-maker.
The advantages of an advance directive
An advance directive enables an individual to think about what they would like to happen to them in the event that they lose the capacity to take informed decisions about their care. Examples of such decisions include:
- The use of intravenous fluids and parenteral nutrition.
- The use of cardiopulmonary resuscitation.
- The use of life-saving treatment (whether existing or yet to be developed) in specific illnesses where capacity or consent may be impaired – for example, brain damage, perhaps from stroke, head injury or dementia.
- Specific procedures such as blood transfusion for a Jehovah’s Witness.
Even if a directive is not eventually issued, the topic may motivate the individual to discuss future arrangements with their doctor, family and friends.
An advance directive is legally binding in the sense that a doctor, who gave a patient life-saving treatment against their wishes expressed in a directive, faces legal action.
However, as the use of advance directives becomes more commonplace, controversies are bound to arise (eg the rights of pregnant terminally ill women) and the legal issues continue to be the subject of debate.
Management of an advance directive
For a directive to be enforced, it is first necessary that the clinical team be aware that such a provision exists.
It could be recorded in the individual’s computerised or manual notes and a form for the purpose is available from the National End of Life Care Programme website.
Just as a will has an executor, so a directive may have a healthcare proxy. This person may also have ‘lasting power of attorney’.
Such a provision is common when a person is no longer competent to manage his or her own financial affairs. The role of the proxy is to see that the wishes of the individual are carried out.
He or she does not have the power to make decisions. The wishes of the patient may not be overruled by relatives.
An advance directive does not have to be drawn up by a solicitor but neither does a will.
However, in both cases, the involvement of such a professional should substantially reduce the chance of an oversight that would result in failure of the will to be observed.
A will usually has to be signed by the author and co-signed by two independent witnesses who are not beneficiaries of the will.
It is sometimes said that only one witness is required for an advance directive but to replicate a will, two may be safer and they should be people who do not stand to benefit from the estate.
When do advance directives become helpful?
Advance directives become active when a patient is no longer able to make his/her own health-care decisions or becomes mentally incapacitated. Until such point is reached, the patient is the ultimate decision maker regarding their health.
Some common scenarios where these directives can help with the decision making process are
- persistent vegetative state,
- severe brain injury,
- advanced Alzheimer’s disease or other forms of dementia,
- critical medical illness affecting mental capacity
Advance directives not only help with decision-making in times of incapacity, but they can also clarify one’s preferences during times of uncertainties while still cognitively intact.
At times, deciding whether to accept or decline a treatment may overwhelm a person and cast uncertain on their judgment.
By referring to previously delineated preferences based on overall goals of care, such decisions may become simpler to make as smaller components of a bigger picture.
How can one obtain and prepare living will and advance medical directive forms?
Preparing documents for a living will and advance directive can be done at any time during an adult person’s lifetime.
As one’s preference can naturally change during one’s life, these documents can also be amended and modified to reflect the changes.
Obtaining medical advance directive documents is simple. Medical offices, hospitals, social workers, attorneys, and even post offices may carry these documents.
In fact, hospitals receiving medical and Medicaid payments are required to offer their patients these documents.
A good place to begin this process is an open discussion with a primary-care doctor or other treating physicians. As stated earlier, living wills and advance directives can be very broad or quite specific.
Meanings, implications, risks, and benefits of components of an advance directive deserve clear understanding before they are signed in a legally binding document that may be relied upon for end-of-life decisions.
Selecting a person as a medical power of attorney is also an important decision. The surrogate decision maker does not necessarily need to be a family member or a relative.
In truth, any person in whom an individual trusts to carry out their wishes on their behalf and in good faith, can be designated as a health-care proxy.
Additionally, because these are legal documents of various forms, appropriate and accurate drafting with the help of an attorney is advised.
Furthermore, as regulations may vary from state to state, your attorney can also guide you through how to do a living will and an advance directive.
Although it is highly encouraged, it is often difficult to address issues pertaining to terminal illnesses, end-of-life care, and death with loved ones and caregivers.
Despite having proper documentation, it is important for family members and caregivers to have some general knowledge about a patient’s preferences.
More importantly, family members or anyone close to the individual must know where these documents are located and be able to provide them or refer to them in cases of emergency.
It is also extremely beneficial to have extra copies of these documents and to bring them with the patient to the hospital, emergency room, or even doctors’ offices.
Who should make an advance directive?
An advance directive can be made by anyone who is over 18 years old (16 in Scotland), is of sound mind and cares about the issues involved.
Some people may be especially likely to choose the option, including those with incurable cancer, those with a progressive neurological disease and those with mild memory loss, as they are still of reasonably sound mind but at risk of progressing to dementia.
If, as a doctor or healthcare professional, you are approached by someone who is considering an advance directive there are several points to make:
- Think very carefully about the content of such a directive before committing yourself.
- Discuss it with those close to you and try to cover all eventualities.
- It is a valid legal document that cannot be overruled by family.
- It is not possible to request illegal action such as euthanasia.
- It is not possible to request interventions that the medical team regard as excessive and inappropriate.
- It can be changed or revoked at any time if you are competent to do so.
- It must be signed, dated and witnessed.
- It is not essential to make it via a solicitor but there may be some safeguards in doing so.
- Doctors and family should know that such an advance decision exists and where it is lodged.
- Make sure that you also have an up-to-date ordinary will. About a third of people die intestate.