Every one of us should have advanced directives as soon as our parents are no longer able to legally make medical decisions for us at the age of 18. Life is fickle and we never know what may happen. Yet, an article in NH Magazine by Karen A. Jamrog entitled, The Importance of Creating an Advanced Directive: If the worst happened, would your loved ones know what you would — or wouldn’t — want? (June 13, 2019), she writes:
”More than 70 percent of people have no advance directive or anything remotely resembling one, says Mary Valvano, MD, chief of emergency medicine at Portsmouth Regional Hospital. But advance directives empower patients and spare friends and family from possibly having to make gut-wrenching decisions. …Valvano points out, some of the most famous cases involving advance directives centered on young individuals in their 20s who didn’t have one — Karen Ann Quinlan and Terry Schiavo, for example, who long persisted in a vegetative state and sparked bioethical debate over the right to die.”
It is understandable why so many people avoid the topic. Part of the human psyche is to convince ourselves that either nothing bad will happen, or that we have time before we need to worry about it. And, let’s face it talking about our mortality can be uncomfortable, not only for us, but also for our loved ones who don’t want to think of us being gone.
Jamrog’s article also reminds us that it can be complicated, especially now that machines can keep us alive even when there is no hope for recovery. However, it is better to have this difficult and uncomfortable conversation now, when you can make your wishes known and your loved ones can ask you questions so they really understand what is important to you.
”When you’re at the moment of life and death,” Valvano says, “it’s super-hard [for your loved ones] to make a decision that says, ‘Don’t do everything,’ even though they know that that’s what you wanted.” An advance directive will prevent you from receiving treatment that you don’t want and will potentially spare your loved ones from having to agonize over “one of the most difficult decisions of anybody’s life.” “Sometimes,” Valvano says, an advance directive “is the best last gift that a loved one can give to their family.”
What is an Advanced Directive?
An advanced directive is a legal document that specifies what types of medical intervention we wish to receive if we become unable to communicate or make decisions about our own care. A Durable Power of Attorney for Health Care (DPOAH), sometimes called a medical or health care power of attorney, is a type of advance directive in which you name a person to make decisions for you when you are unable to do so.
Jamrog’s article invites us to consider what we value in life and how we want to live by asking:
“Would you want to be kept alive via mechanical means? If you’re not sure what your options might be — say, what being on IV nutrition or a ventilator is like — talk to your physician, Valvano says. “It’s much better to have those conversations” during a relaxed office visit than “at the bedside with me as the emergency physician trying to explain” what cardioactive drugs are, for example, or what is involved with delivering electrical shocks to the heart. “It’s never enough time when someone’s critically ill.”
This brings up a good point: the need to understand what it is that you are asking for. When considering a Do Not Resuscitate (DNR) order, if you are young and generally healthy you may want to be resuscitated if you have an acute illness or are in an accident. However, understanding how violent the act of resuscitation can be, if you are 90 and in poor health, you may choose not to be resuscitated. The hard part of advanced directives is making treatment decisions. The actual creation of an advance directive is quite simple and can be completed in as little as 10 minutes. It depends on how much detail someone wants to go into by completing additional advanced directives such as a Portable-Do Not Resuscitate (P-DNR) or a Provider Orders for Life-Sustaining Treatment (POLST), listing more specific treatment instructions.
What Happens in an Emergency When You Have Not Completed Advanced Directives?
In the state of New Hampshire there are surrogacy laws that will come into play. A court order is not necessary in order for your health care provider to ask the following people, in this order, if they are willing to be your surrogate: your spouse, civil union partner, or common-law spouse – unless there is a divorce, separation agreement, or restraining order against the person; your adult son or daughter; your parent; your adult brother or sister; your adult grandchild; your grandparent; your adult aunt, uncle, niece, or nephew; your close friend; the agent with financial power of attorney or a conservator; and finally a guardian of your estate.
As soon as the surrogate has been identified and named in the medical record, they may make health care decisions for you to the same extent as a durable power of attorney agent. However, they are only appointed for a 90-day period, after which time either; you regain decision-making capacity, or a guardian is appointed. Surrogacy can get messy, and unless you’ve had a conversation with all of the potential people that could become your surrogate and have made sure they understand your wishes, they are going to need to guess what you would have wanted. It is better for everyone involved, including yourself, if you have advanced directives in place and have named a DPOAH prior to needing one.
Depending on the type, most advance directive forms are available online or through your doctor. They are free and do not require an attorney to complete. A DPOAH simply requires that you complete the form by naming an individual who will make the decisions on your behalf, indicate the kind of care you do and do not wish to receive, and then sign the form in front of two witnesses. Give it to your doctor so that it becomes part of your medical records.
Consider carefully who you name your DPOAH agent, have a discussion with that person and make certain that they understand your wishes and are willing and able to do what you want. This may sound simple, but when the moment actually comes and a person is asked to make the decision to stop life-saving treatment, even when they know that it is the decision you want them to make, it is a very difficult thing to do.
Title X: New Hampshire Statute, Public Health, Chapter 137-J, Durable Power of Attorney for Health Care (DPOAH)
A link to the full text of Title X can be found below, but here are some of the definitions and highlights in layman’s terms:
Definitions of the people who may be involved when creating a DPOAH include: the “Agent," the adult who is given the authority to make health care decisions on your behalf; the "Principal," any person 18 years of age or older who has executed a DPOAH; the "Health Care Provider," the individual or facility licensed, certified, or otherwise authorized to administer health care; and the "Residential Care Provider," which is a facility, such as a nursing home.
“Artificial Nutrition and Hydration” means the use of anything that is not the natural ingestion of food or fluids.
The "Attending Physician" is the doctor, selected by or assigned to a patient, who has primary responsibility for the treatment and care of the patient.
Having "capacity to make health care decisions" means you can understand the nature and consequence of a health care decision.
The DPOAH, which delegates the person you have chosen to make health care decisions on your behalf, should not be confused with the consent forms you may fill out upon admission to residential care. Also, keep in mind that a "health care decision" includes not only the treatment you say is okay, but also the treatments you refuse. Some examples of "Life-sustaining treatments," the procedures that if you did not receive would cause death, include cardiopulmonary resuscitation, mechanical respiration, kidney dialysis, drugs to maintain blood pressure, blood transfusions, and antibiotics.
It is important to remember that the DPOAH only goes into effect when you lack capacity to make health care decisions, and that your physician must make this determination and provide a written order stating that you no longer have capacity to make your own decisions. You complete the DPOAH with your instructions, give them to your doctor, and continue to make your own decisions. No one gets to make decisions for you until you cannot make them yourself. And, even when the doctor invokes the DPOAH because you lack capacity, treatment may not be given to you or withheld from you if you object.
Additionally, even when the DPOAH is invoked, your agent, the person you have given authority to, cannot consent to you being voluntarily admitted to a state institution, give consent for you to voluntarily be sterilized, consent to withholding life-sustaining treatment if you are pregnant, and artificial nutrition and hydration may not be withdrawn or withheld under a DPOAH unless there is a clear expression of such power in the document. So, rest assured that even when someone is given the authority to make decisions for you, there are limitations that will protect you.
There are some constraints on who you may assign to act as your agent. Your health care provider and their employees, and your residential care provider and their employees, are restricted from being your agent. The person you chose should be someone you trust and must be at least 18 years old. It’s also a good idea to appoint an alternate agent in case the person you assign is unwilling or unable to act as your agent. The alternate would have the same responsibilities and authority if your designated agent is unavailable, so make sure you have a discussion with them about your wishes and that they have a copy of the DPOAH.
There are also limitations on who can act as the two witnesses when you sign the DPOAH. The person you have named as your agent, your spouse, your heir, or any person entitled to any part of your estate, cannot be a witness. Only one of the witnesses may be your health or residential care provider or their employee. And, both witnesses must be willing to affirm that you were of sound mind, free from duress, and voluntarily signed the form.
Remember, you are not stuck because you have created advanced directives. The DPOAH can be revoked. If you no longer want the person you’ve name as your agent to act as your agent, you simply provide them this information in a written statement or tell them in the presence of two witnesses. If you change your mind about the treatment you want to receive or refuse, you draw up a new form with updated instructions. Just be sure to provide your health care or residential care provider with the updated information.
Once the DPOAH is invoked, the agent can request, review, and receive any information, oral or written, regarding your physical or mental health, including medical and hospital records. If your agent requests an act or omission contrary to the moral or ethical principles of a health or residential care provider of which you are a patient or resident, the care provider will allow for you to be transferred to another facility and shall incur no liability for refusal to carry out the directions given by the agent. Furthermore, your agent cannot be subjected to criminal or civil liability for making a health care decision in good faith if it is pursuant to the terms of the DPOAH and they used their authority in a manner consistent with the requirements of Title X and New Hampshire law.
Before you sign the DPOAH, you must be given a disclosure statement which will lay out some important facts about the responsibility and authority you are giving the person you name as your agent. The disclosure statement must accompany the DPOAH. Once you have completed the form indicating who will make decisions for you, and the treatments you will allow or decline, make sure that the information is available to those who need it. Your agent, the alternate agent if you’ve chosen one, your health care providers, and if you move into a residential facility, make sure they receive a copy also.
One last bit of information; be aware that in New Hampshire your DPOAH will not be effective in the event of a medical emergency. Ambulance and hospital emergency department personnel are required to provide cardiopulmonary resuscitation (CPR) unless they are given a separate directive that states otherwise. This directive is called a Portable-Do Not Resuscitate (P-DNR), which is designed for people whose poor health gives them little chance of benefiting from CPR and instructs ambulance and hospital emergency personnel not to attempt CPR. Your physician must complete this form with you. While you and your doctor are filling out the P-DNR, consider also filling out the Provider Orders for Life-Sustaining Treatment (POLST) form, which lists your decisions on CPR, the use of intubation and mechanical ventilation, medically administered fluids and nutrition, use of antibiotics, and comfort care.
Advanced Care Planning Guide: https://www.nhhca.org/files/2015/04/ACPGuide.pdf
Foundation for Healthy Communities website: https://www.healthynh.com/fhc-initiatives/advance-directives-healthcare-decision-coalition.html
Text of New Hampshire Statute Title X: https://www.nrc-pad.org/images/stories/PDFs/newhampshire_DPOAH.pdf
Additional text of New Hampshire 137-J: http://www.gencourt.state.nh.us/rsa/html/x/137-j/137-j-mrg.htm
Example Portable-Do Not Resuscitate Form: http://www.healthynh.com/images/PDFfiles/advance-directives/P-DNR%20Form%203rd%20%20Final%201.29.07.pdf