Decisions, Decisions, Decisions
“The nature of things dictates we must leave those dear to us.
Everything born contains its own cessations.” Buddha
One of the hardest things we each will do is to take the time to think about our wishes at the end of life. Emotions will run the gamut, from sadness at leaving friends and family to concern over things left undone and uncertainty over the future. Some people think that leaving things to chance is a wise decision, but confounding grief with guilt and uncertainty for those loved ones we leave behind seems unkind; and it is unlikely that we will achieve the end we desire or expect. Whether we chose to “Rage, Rage against the dying of the light,” like Dylan Thomas or “Approach the grave, like one who wraps the drapery of his couch about him, and lied down to pleasant dreams,“ from William Cullen Bryant’s Thanstopsis, end of life decisions will be made either by us or for us; the choice is ours.
The results of numerous studies make it clear:
Coordinated advance care planning improves end-of-life care
Advance care planning reduces the incidence of anxiety, depression and post-traumatic stress in surviving relatives
Advance care planning improves patient and family satisfaction with hospital care
As a population we have not come to terms with the reality of death and dying
The U. S. population over 65 has tripled over the last century from approximately 4% in 1900 to 14% in 2012 and is expected to be 20% in 2060
A third of people over 65 experience an ICU hospitalization in the last months of life many of whom have three or more such hospitalizations
82% of people say it’s important to put their wishes in writing and less than a quarter of them, a mere 23%, have actually done it
90% of people say that talking with their loved ones about end-of-life care is important, but only 27% have actually done so
60% of people say that making sure their family is not burdened by tough decisions is extremely important
56% have not communicated their end-of-life wishes
80% of people say that if seriously ill, they would want to talk to their doctor about medical treatment toward the end of their life; only 7% have
Nearly 80% of Americans want to spend their last days with friends and family. However, only 24% of those over 65 die at home, while 63% die in hospitals or nursing homes and the patients who go from the ICU to a nursing home (many times to a place they have never been to before) survive an average of 3 days.
Be Prepared with an Advance Health Care Directive
It has long been said that the best offense is a good defense. Health care decisions often are highly emotional, whether they be about treatment choices, where elders should live, who should provide care, or what we want end of our life to look like. Like so much else in life, communication is at the heart of our end of life decisions. It is important that our wishes be clear and we have an Advance Directive or Living Will in place. The objective of an Advance Directive is to provide others, including your health care team, with your wishes and instructions when you are not able to do so yourself. Naming a health care proxy allows us to decide who we want to make decisions on our behalf, when we are unable to do so.
Regardless of age it is important for everyone to have an Advance Directive. In fact, it is often easier to think about end of life when we are not encumbered by the emotional upheaval that often accompanies serious illness or injury. A good starting place to begin thinking about questions surrounding end of life is to look at the various documents on the subject that exist already. One of these documents is called your 5 Wishes and another, a Physician Order for Life Saving Treatment (POLST). An important part of each of these documents is to make whatever your wishes are known, in case you are unable to communicate them on your own. Thinking ahead and signing one of these documents as well as designating a proxy to speak for you if there comes a time when you cannot speak for yourself are the simplest ways to mitigate some of the uncertainty of illness or injury.
The 5 Wishes document contains a series of questions to complete that will help explain to others what your wishes are should you be unable to speak for yourself. The questions are straightforward and here are no right or wrong answers. You are encouraged to talk to others to help you clarify your answers. Your 5 Wishes document becomes a personal health care directive accepted in 42 states and the District of Columbia.
- My wish for who I want to make medical decisions for me when I can’t make them for myself.
- My wish for what kind of medical treatment I want or don’t want.
- My wish for how comfortable I want to be.
- My wish for how I want people to treat me.
- My wish for what I want my loved ones to know.
The Physician Order for Life Saving Treatment Form (POLST) form is another document to be completed as part of end of life planning. Click here for California's sample POLST form. In the few states that prefer changing the acronym of a Physician order to a Medical order the same form is called a MOLST. By writing down your wishes in a document that is signed by a physician, it becomes a legal physician order for treatment that can be honored by first responders as well as the hospital staff.
Once complete, it is important to keep your 5 Wishes and POLST or MOLST with you. Put a photo of it in your phone and give a copy to your family members, physician, health care proxy as well as your local hospital. If you keep the original at home, let others know where to find it. Attaching it to the refrigerator is one such location that is easy to access. As one palliative care nurse reiterates constantly to her patients, “Think, Plan, Write it down and SHARE.” Dr. Angelo Volandes, a physician who has devoted his life to helping others ease the transition to death, agrees telling us, “The success of this essential conversation about end of life care lies not in the individual path chosen, but rather in the active and fully informed participation of the patient and family members.”
Dr. Volandes' belief in the power of these conversations is clear in his book, The Conversation, where he suggests consideration of the following questions:
What kinds of things are important to you in your life? What makes you happy?
If you are very sick and aren’t able to do the activities you enjoy, are there any specific medical treatments that might be too much for you?
What fears do you have about getting sick or the medical care you might need?
Do you have any spiritual, religious, philosophical or cultural beliefs that guide you when you make medical decisions?
What are the family tensions that might impact decisions about your end of life care? How involved do you want your loved ones to be? Who do you NOT want to be involved in your care?
If you had to choose between living longer and having a higher quality of life, which would you pick? When would it be acceptable to shift from curative care to comfort care?
Where would you like your life to end and who would you like to be with you? How important is it for you to be at home?
What would you want to happen to your body? Would you want to donate your organs? All of them? Some of them?
What affairs do you need to get in order financial planning, Power of Attorney, property records, accounts, etc? Acknowledging that health care decisions and financial ones are ruled by separate documents, these issues are still important to consider. In cases with dependent children, parents need to assign guardians and whenever possible to have adequate child support set aside.
These issues can be confusing enough when thinking about our own wishes; they become even more difficult to decide for someone else. End of life discussions are about our deepest values: Who do I love and trust? What makes my life worth living? Do I have a right to say, “Enough?” How do I want to die? What do I owe my descendants? When is it ok to let go? Sometimes it is easier when speaking with friends or family, to acknowledge that these topics have come up as you think about retirement or see someone close to you become ill or injured. It also helps to remember to say thank you as you engage others in the discussion of your wishes. These are not easy topics and letting others know they are appreciated for taking the time and making the effort to discuss these matters with you encourages openness and honesty. Whether it takes a load off your mind or helps you clarify your own thinking, acknowledgement of the difficulty inherent in these conversations in our culture takes effort, intention and support all of which should be appreciated as the gifts that they are. Many psychologists also believe that talking about your wishes with friends and family can help dispel our natural propensity to fear dying and as a consequence be more at peace.
Identifying Your Medical Proxy
Through these conversations, you may find that the person you initially thought would be your proxy and speak for you if you can’t speak for yourself, isn’t able to perform the task. You may find that those who are closest to you are too emotionally attached to be able to separate themselves from your wishes. It is important to consider whether their sentimentality will mask their ability to follow your instructions when the theoretical becomes reality. Often the person you ultimately select may not turn out to be the most obvious person, like your spouse or eldest child, but electing someone who knows you well; someone you solicit advice from and trust is a good beginning.
It is crucial that you and your proxy take the time to discuss your wishes and that they have an opportunity to ask questions and seek your guidance while you are able to give it. If you think those you love or who know you well know exactly what to do in case of an unexpected emergency, consider the results of the 2006 National Institute of Health (NIH) study of 3000 patient proxy pairs: Proxies were wrong 68% of the time about the wishes of the person they were representing. The data reinforces how important it is to have these discussions with your proxy, and to have them early.
Proxies must be able to:
- Understand and be willing to follow your wishes
- Be a good communicator
- Be able and willing to talk to others to explain the situation
- Be able and willing to speak up in the medical environment
Dr. Volandes offers us the following four issues to consider when choosing our health care proxy:
- Do you trust your proxy with your life? Does your proxy understand what your values and priorities are?
- Will your proxy be able to separate his or her feelings from yours and act on your wishes? i.e. “If I cannot communicate for myself, will you advocate for me to make sure that what I want is done, even if you do not agree with the choices I have made or would not make the same choices for yourself?”
- Will your proxy be a strong advocate of your expressed choices even if others (including family members) disagree?
- Does your proxy live close by or be available at least by phone? Are they willing and/or able to drop everything for you?
For those who may prefer a more virtual approach than an in-person conversation in thinking about what choices we would make, the PREPARE website www.prepareforyourcare.org developed by Dr. Rebecca Sudore a geriatrician at UCSF, offers a free and easy-to-navigate interactive video program to assist in thinking about what is important in medical care at the end-of- life. The prompts and information helps facilitate decision making and allows you to schedule a follow-up time when you might be better able to decide on certain topics if you are unable to decide immediately. The computer will gently remind you of your approaching deadlines and help you adhere to the planning schedule that you had set out for yourself and actually agreed upon.
The Conversation, by Angelo Volandes, MD
The Guide to the Great Beyond: A Practical Primer for Preparing for the End of Life, by Jane Brody
National POLST Paradigm – What is a POLST Form
The Dinner Party - Loss at a Young Age