Contemplating our own death is one of the hardest challenges we will ever 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 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.
There are a number of documents available in your state for that purpose. The umbrella term for these is “advance health-care directives.” Here is a step-by-step guide to begin the conversation about final wishes, and to understand which documents are required.
- If you are over the age of 18, appoint a health-care 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 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”.
- Health Care Power of Attorney (HCPOA)
Once you have had that conversation, you will be required 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 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 expresses 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.
- 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. For this kind of condition, a specific directive should be prepared which is tailored for advanced dementia.
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. 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 the document will be easily visible.