Death and how it will come to you is one of the most difficult questions you could think about. 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 Schiavo’s husband prevailed, the feeding tube was withdrawn, and, fifteen years after she was injured and never having regained consciousness, she was finally allowed to die.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.
- If you are over the age of 18, appoint a healthcare agent to speak for you when you can’t.
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 the complexity that might arise in reconciling your wishes with available medical options. Depending on which state you live in, your agent can also be called a “health care proxy.”
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.
- Health Care Power of Attorney (HCPOA)
Once you have had that conversation, visit your lawyer to name your agent formally in an HCPOA document. HCPOA conveys legal authority on your agent or proxy to express your health-care decisions when you are unable to.
- 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 three 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.
- Living Will (also known as Physician’s Directive)
This document is for use when you are not enjoying the quality of life. Either death is imminent; you are in a persistent vegetative state; or you are permanently unconscious, permanently confused, or unable to care for yourself. If you have no awareness of others; can’t remember or understand or express yourself, or are unable to move, bathe, or dress yourself, it’s advisable to have expressed, in advance, the kind of treatment you want to receive or not receive.
A living will 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.
You may also require physicians, and not your agent, to be the ones to decide whether to cease life-prolonging procedures as you would like. This decision will relieve your agent from the heavy responsibility of making that irreversible choice.
Living wills are legal in almost every state. Ask your lawyer. Don’t make this kind of document yourself. Otherwise, you risk that the document may be misinterpreted, with drastic consequences.
- Specialized Directives
Medical decision-making varies depending on specific health conditions, so specific directives may be tailor-made for those conditions. For example, people suffering from advanced dementia benefit from a directive, in addition to the HCPOA or living will, 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.
For this kind of condition, ask your lawyer to prepare a specific directive tailored for advanced dementia, using the directives created by End of Life Washington
or End of Life Choices New York.
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 the 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. Living wills should be reviewed every six months because wishes can change depending on the progress of the illness.
- POLST or MOLST
This 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).
This document should be filled out in consultation with the patient’s physician. The acronyms stand for “physicians’ orders for life-sustaining treatment” or “medical orders for life-sustaining treatment.” Many states provide for this kind of document.
- 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 POLST or MOLST, 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 doesn’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. Contact our Chicago area office at 630-568-6656 to discuss how we can help you with your long-term care planning.