If you consider yourself someone who prepares for most eventualities, then you probably have started planning for your retirement, planning for college for your children, and even planning for your death.
When it comes to things like estate planning, most people will have a will or some semblance thereof, life insurance, and maybe even a trust set up. All of this planning is typically done with your loved ones in mind. The idea here is to spare them the pain and difficulty of ascertaining where you wanted your assets to go; and provides for some financial stability of your dependent loved ones.
If you have done all of the above, then you have given your loved ones a most practical and loving gift.
However, I must ask whether or not you have prepared YOURSELF for any medical mishaps or tragedies?
You may have a will, but do you also have a living will? Does your physician or care provider have an advanced directive or health care proxy on record for you?
Are you familiar with those things and the differences between them?
Do you know why they are important to have?
The answer to this is that they provide a blueprint for your providers and loved ones to follow if you are ever medically incapacitated and unable to speak on your own behalf.
Let’s start with a discussion about each of these elements and what they do.
The Healthcare Proxy
“A healthcare proxy is a document (legal instrument) with which a patient (primary individual) appoints an agent to legally make healthcare decisions on behalf of the patient, when he or she is incapable of making and executing the healthcare decisions stipulated in the proxy.”
The agent appointed by the healthcare proxy is also known as a Durable Power of Attorney.
You may hear someone erroneously state,
“Jayne is my sister’s healthcare proxy.”
This would be a statement made in error. The healthcare proxy is, in and of itself, a legal document. It names an agent or representative who will relay your concerns and desires to the healthcare professionals who are working with you, and who have the power to implement your directives. The agent or representative is just that… an agent or representative, empowered by the healthcare proxy document.
The healthcare proxy does not speak on your behalf, but the agent or Durable Power of Attorney named in the document does. Below is a brief description of who may serve as your Durable (Medical) Power of Attorney.
In the above scenario, Jayne would be her sister’s Durable Power of Attorney.
“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. In some states this directive may also be called a durable power of attorney for health care or a health care proxy.
The person you name may be a spouse, other family member, friend or member of a faith community. You may also choose one or more alternates in case the person you chose is unable to fulfill his or her role.”
The Living Will aka Advance Directive
“A living will, also called a directive to physicians or advance directive, is a document that lets people state their wishes for end-of-life medical care, in case they become unable to communicate their decisions. It has no power after death.”
Mary Randolph, JD
Living wills and other advance directives are written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. Advance directives guide choices for doctors and caregivers if you are terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.
By planning ahead, you can get the medical care that you want, avoid unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief. By implementing this resource, you also help to reduce confusion or disagreement about the choices you would want to be made on your behalf.
Advance directives are not just for elderly adults. Unexpected end-of-life situations can happen at any age, so it’s important for all adults to prepare these documents.
Unlike the healthcare proxy, the living will or advanced directive does not name an agent. Instead, it gives very specific information and instructions which detail your desires for medical treatment. It often includes, but is not limited to your wishes regarding:
-resuscitation and DNR (“do not resuscitate”) orders
-anti-biotics or anti-viral medications
-palliative care (“comfort care”)
-organ and tissue donation
-donating your body
For each category under which you have documented your wishes, you also have the right to document when you would want care to begin and end. Consider the following:
“What will be the circumstances under which you would want any supportive care to be withdrawn?”
Particularly for supportive issues like mechanical ventilation, tube feeding and dialysis, it is important that if you have a period at which you would want these withdrawn, the circumstances or time frames should be spelled out.
You might recall the case of Teri Schiavo. Mrs. Schiavo was a woman who was in a persistent vegetative state after suffering a brain hemorrhage. She remained in this state for 15 years. After some time had elapsed, her husband made the decision to withdraw supportive care, which largely included her tube feedings. A great deal of controversy surrounded his decision.
He insisted that she would not have wanted to live in such a condition without the hope of recovery. Her parents insisted that she was showing small signs of improvement, and that supportive care should be continued.
When the case went to court, an injunction was issued by a judge as to how her caregivers were to proceed. In that time, there were countless motions and court proceedings. At one point her feeding tube was removed for a few days, and then another judge ordered that it be reinserted. That was in 2001. The battle continued for another 4 years. The appeals went all the way to federal court, where, in 2005, the decision to remove the feeding tube was upheld.
This had to have been a nightmare for everyone involved. It is not something that anyone would wish upon their loved ones.
This situation can be avoided with appropriate planning and communication.
Perhaps one of the hardest decisions for loved ones to make are DNRs or DNIs. These stand for “Do Not Resuscitate” and “Do Not Intubate” orders, respectively. Of course this would be among the most controversial options, as relatives are often left feeling that they have been responsible for the death of their loved one.
Relieve them of any guilt and infighting that would be almost certain to accompany this scenario by making your wishes absolutely clear.
One thing to keep in mind about DNR and DNI orders: You do NOT have to have an advance directive in order to establish them. If these are your wishes but you are not yet ready to complete an advance directive, make your decisions clear to your physician who can record them and write a DNR/DNI order to be placed in your chart in the event that these issues need to be addressed.
Other pertinent facts about the living will/advance directive:
- In order for it to be a valid legal document, it must conform to state-specific requirements regarding whether notarization or witness signatures are mandatory;
- A living will/advance directive can be revoked at any time;
- The document can take effect as soon as it is signed; OR when it is determined that the person cannot communicate their wishes about treatment.
- Even though the living will takes effect immediately, your physicians will rely upon personal communication, as opposed to a document, for as long as is possible.
If and when you decide that you would like to establish a living will or advance directive, give some serious thought and consideration to your values. For instance, consider the importance of being self-sufficient, independent and mobile. Which situations would make you decide that life was not worth living? Would you want treatment to prolong life as much as possible in any situation? Would you want treatment if it would be impossible for you to improve and become independent again? Or would you only want treatment if a cure is possible?
These are deeply personal issues. As you ponder some of them, please imagine how difficult it might be for a loved one to answer these questions on your behalf if they have no idea of what you would want.
If you elect to execute a living will, have conversations with your healthcare provider, as well as with those in your inner circle. Resources for helping you to organize your thoughts and for discussion with those around you can be found at the American Bar Association, the Conversation Project and the Center for Practical Bioethics.
Once your advance directive is written to your satisfaction, you should begin the process of appointing a durable power of attorney through the healthcare proxy.
Please have a discussion with your loved ones so that they can be apprised of and understand your wishes. Make sure that they know who your agent will be. Most of all, establish with them that they will not interfere with your wishes being carried out as they are outlined in your advance directive.
Even though, advance directives can often be done without an attorney, it is highly recommended that you consult with a lawyer who specializes in Estate Planning and Trust and Probate Law. It is even more helpful if that person is certified in this area.
You may be wondering whether the health care proxy can exist and be implemented without the living will and vice versa.
Yes. They can. However, it may lead your loved ones into troubled waters if the two are not presented simultaneously or if one is excluded altogether.
An advance directive or living will can describe your wishes, but should there be any ambiguity on how your wishes are to be carried out, there is no one specific individual who might be presumed to have the answer. In this case, any decisions having to be made will fall to your next of kin, who may or may not know what you would have wanted.
Generally speaking, next of kin is defined as the closest living relative or relatives to a patient. Next of kin can typically be: a spouse, an adult child, or other relative, and typically in that order. Consult with your state regarding how next of kin is established.
If an agent is appointed through your healthcare proxy, but that individual has not been given a list of your specific wishes, confusion can still abound. Your desires will be left to the interpretation of this person; and there may be opposition and push-back from other well-meaning loved ones who feel that this person is acting in error.
Surely, you can imagine the difficulty and pain that arises when a healthcare proxy agent must decide to implement “do not resuscitate” (DNR) orders, or when they must make the decision about terminating life sustaining care, and there are 1 or more family members who are not in agreement with this. It can cause irreparable damage to a family.
In summary, this is how it all works together:
The health care proxy names an agent, also known as the Durable Power of Attorney. The Durable Power of Attorney will serve as the person who communicates and makes decisions based upon the tenets of the living will.
My recommendations to you would be:
- Choose and appoint a Durable Power of Attorney and make sure that it is someone who will honor and respect your wishes;
- Complete a health care proxy so that it is clear who your agent will be;
- Complete a living will or advance directive document.
- While not mandatory, it is highly recommended that you consult with a lawyer regarding your advance directive.
- Review all of this with your primary care provider and ensure that these documents become a part of your medical record;
- Make sure that your loved ones are aware that your health care proxy, durable power of attorney and living will exist, and that they are apprised of the stipulations for each one.
Once all of this is taken care of, sit back and breathe a sigh of relief, knowing that in the event of a medical tragedy, everything is taken care of.