Death is a difficult idea to contemplate but it is a challenge we will have to face. Yet, if we want our dying to be meaningful and merciful, it is imperative that we think about it while we still can. Most of us want to die at home, in a familiar and peaceful setting surrounded by loved ones. We would much rather not spend our last moments in an emergency room or ICU, with strangers futilely pounding on our chests and our families relegated to the waiting room.
With those two alternatives in mind, we need to do all we can to keep control, as much as possible, of decisions that need to be made long before our final moments. We need to think carefully, well in advance, about what makes life worth living, and where pain and limitation have so eroded that quality of life that we would prefer not to go there.
These are notoriously difficult questions, but it is vital to address them anyway. For example, Terri Schiavo spent nearly half her young life unconscious in a condition known as a “persistent vegetative state,” being kept alive by a feeding tube. Her husband and friends claimed that before her severe brain injury, she said that she would not want her life sustained by machines. Unfortunately, she never put that wish in writing. On the other side, her devout family and right-to-life supporters insisted that she be kept alive despite her dire condition. After protracted litigation, Ms. Schiavo’s husband prevailed, the feeding tube was withdrawn, and, fifteen years after she was injured and never having regained consciousness, she was finally allowed to die.
Since her passing, the law has evolved nationwide to encourage us all to document final wishes, to avoid the anguish and uncertainty of Ms. Schiavo’s situation. There are a number of documents available in your state for that purpose. The umbrella term for these is “advance health-care directives.”
It’s our job as lawyers to help you sort through the various directives needed to express your wishes. Here is a step-by-step guide to begin the conversation about final wishes, and to understand which document does what when.
1. Appoint a health-care agent if you are over 18
Decide who, among those who know you well, is best suited to take on this responsibility. That person must possess good communication skills, remain calm in difficult situations, and be able to deal flexibly with complexity that might arise in reconciling your wishes with available medical options. Your agent must make decisions in accordance with your wishes, not what the agent or your family would want for you.
Sit down with that person and discuss your wishes in various scenarios. This is not an easy conversation to have, but there are guides available to help you. Visit “The Conversation” and download the starter kit.
2. Health Care Power of Attorney (HCPOA)
Once you have had that conversation, visit your lawyer to name your agent formally in an HCPOA document. The HCPOA conveys legal authority on your agent or proxy to express your health-care decisions when you are unable to. In New Mexico, the law gives your agent very broad discretion to make medical decisions for you.
Your HCPOA can also express your choice as to whether you do, or do not, want artificial measures that will merely prolong your life but not improve it. Those measures, among others, may include CPR if your heart stops, or breathing or feeding tubes, or repeated courses of antibiotics or chemotherapy.
3. HIPAA authorization
Your agent or proxy will also need access to your otherwise-private medical information. This is best done by a standardized document that complies with the federal Health Insurance Portability and Accountability Act (HIPAA). Without this authorization, your agent will be unable to obtain the medical information necessary to exercise the authority you want him or her to have.
Now armed with your agent and the HCPOA and HIPAA documents, you will know that if you were to meet with an accident or lose consciousness, you have chosen and empowered an advocate to speak for you. You should review and update these documents every five years or so.
The next two documents are important at the end of life. All these documents should stipulate that you desire comfort care, to keep you clean and as pain-free as possible. Remember, though, that you must create these documents while you are still able to know and communicate your wishes, so it’s best to do the next two documents at the same time that you do your HCPOA and HIPAA.
Ask your lawyer. Don’t make this kind of document yourself. Otherwise you risk that the document may be misinterpreted, with drastic consequences.
3. Specialized Directives
Medical decision-making varies depending on specific health conditions, so your HCPOA may be tailor-made for those conditions. For example, people suffering from advanced dementia benefit from a directive, in addition to the HCPOA, specifically requesting that hand-feeding be ceased when the person can no longer speak, recognize loved ones, or move purposefully. Otherwise, caregivers are obligated to cajole or demand that the patient be fed by hand, taking advantage of a primitive reflex to open the mouth. This risks that the person may inhale the mush instead of swallowing it, in some cases causing pneumonia.
You may also want to consider giving your HCPOA the ability to mental health decisions on your behalf. If you are suffering from an altered mental state, as sometimes happens with dementia, a psychiatric facility may have to file a petition in Mental Health Court to have a treatment guardian appointed for you. A treatment guardian is only authorized to make mental health decisions, not general medical decisions. These situations are becoming increasingly common as our bodies outlive our minds, sometimes causing behaviors that require psychiatric intervention to stabilize your mental well-being and improve quality of life.
For these kinds of conditions, ask your lawyer to include your wishes in your HCPOA. You may wish to review the directives created by End of Life Washington or End of Life Choices New York to assist you in making these decisions.
If, however, you suffer from a neurological illness like Lou Gehrig’s disease (ALS) or advanced Parkinson’s, even though most of us would decline mechanical treatments, those same treatments may be important aids to preserve quality of life for people with those conditions.
Again, remember that you must create these documents while you still have the capacity to communicate your wishes. If you have a terminal illness, your HCPOA should be reviewed every six months, because wishes can change depending on the progress of the illness.
The Medical Order for Scope of Treatment (MOST) is a brightly colored, short-form document that is primarily intended for emergency responders when the patient is frail and is likely to die within a year. It is designed to be immediately recognizable by hospitals and EMS personnel, to express that when the patient is unresponsive, cardio-pulmonary resuscitation (CPR) and other aggressive treatments are desired or not desired (DNR). In New Mexico, you can also direct that you do not wish to be removed from your home.
This document is a medical order and must be filled out in consultation with the patient’s physician.
5. Make Your Documents Known
When it comes time to use your documents, they must be readily available. Give a copy of them to your agent or proxy, make sure they are included in your medical records, and, if you are in need of the MOST, post it beside your bed or on your fridge where EMT knows to look for it. If your documents can’t be found, or if your agent or family don’t understand them or ignore them, you will have spent your time, effort, and money in vain.
But if all goes according to your wishes, you will have done your best to create a good death, one that is as meaningful as possible for all concerned. If we can assist in helping you with any of the documents above, please don’t hesitate to contact our Albuquerque office at (505) 830-0202.