The fourth “Wish” has to do with how you want people to treat you….
The movement to involve the patient in the decisions at the end of life has been steadily growing support and credibility, with “Five Wishes” being used in over 40 states and translated into 23 languages. The “Five Wishes” is the first real attempt to address the personal, emotional and spiritual needs as well as the medical wishes if there comes a time when a person can no longer actively participate.
Briefly, the “Five Wishes” starts by having you decide who will be your primary health care agent. In most cases, you would select someone you feel knows you very well and would respect your wishes and desires at a time in your life when you could no longer make that decision. This would not be your physician or healthcare provider, but in order for your designated person to take over for you, the treating doctor and another healthcare professional would have to agree you could not make these decisions for yourself. Of course, you would want to have selected two backup individuals in case your first choice was unable to do so.
The second set of “Wishes” walks you through a series of critical questions about permanent medical situations that would leave you “alive” but no longer able to communicate or participate in life, such as a coma or severe brain damage. You can also designate serious and terminal medical situations you would not want life-support treatment for because for you it would not lead to recovery and the quality of your life would be too minimal to warrant such extreme efforts.
The second set of “Wishes” may leave some people feeling anxious about refusing treatment and what will be the consequences of this. It might generate the fear of intense pain caused by the illness or condition they are going through. This might make some people reluctant to pursue having an advance directive because they imagine it will keep doctors from providing any kind of care. For example, a person might hear the words “Do Not Resuscitate” and imagine themselves gasping for air or collapsing with a heart attack and everyone standing there not helping. These situations are often caused by some acute situation and can be reversed by medical intervention. Remember the Advance Directive is used for situations where you are gravely ill such as in a coma or suffering from a severe brain injury or perhaps a terminal illness that has progressed to a point where the ability for the body to improve is very slight or not at all. When a person is “resuscitated” a team of medical provider need to be aggressive with the body to force it to respond to mechanical and chemical interventions often times bringing it back even more compromised than the original medical condition. This is true when the person gravely ill is resuscitated and is put on a ventilator in order for the body to get enough oxygen.
In situations where you are gravely ill and your body is entering into the dying phase, your body may no longer respond by automatically inhaling or exhaling. It is often true when someone is dying, their breathing can become irregular. However, if you are experiencing shortness of breath that creates distress or anxiety, you are going to receive assistance to reduce the discomfort or difficulty. Your heart rate may slow considerably as your body becomes less responsive to its surroundings. During this time, you are usually more likely to be asleep and may be difficult to arouse. In a case of a coma, you are not able to interact with your surroundings and your body’s needs are very limited.
The next sets of “Wishes” have to do with the personal, spiritual and emotional wishes. . This is where you really get to express what “living well” or what a “Good Death” means to you.
The third “Wish” has to do with what constitutes “comfort” for you. This is where you can decide what will make you feel cared for and pain-free, in mind, body and soul. You can designate what level of pain management you would prefer. If your condition requires enough medication that you are pain-free, but at that level you spend a lot of time sleeping peacefully is that what you would prefer? Although less pain medication might allow you to be awake and interact with others, would the level of pain diminish the quality of time? What kind of comfort items would give you a sense of care? Do you want to be shaven every day? Is it important to have music playing or a view of the outside? It is important to think about what will give you a sense of comfort and care. Remember the Advance Directive is to be used when you can no longer direct your care due to your medical condition.
The fourth “Wish” has to do with how you want people to treat you. This is what kind of emotional connection you would want. Do you want someone holding your hand and speaking to you even if it seemed you were not responding? Do you want to know your community has been told and they are praying for you? When people are around you, do you want them to relate to you with kindness and cheerfulness, not sadness. What kind of interaction do you believe will be the most beneficial for your quality of life during this time?
The final “Wish” will really help you focus on completing your life in a very personal and powerful way. This is the time to think about your relationships. Are there some that you feel need to be healed? What would you like to be remembered for? As the people in your life go on, do you have a hope for their life? Is it time to tell the people you love that you love them? In your Advance Directive, you make it possible to complete your life in a way that will bring you a sense of peace.
It has been shown that the level of “perceived suffering” during the end of life is in part due to the feeling of an unfinished life or a life that has been abruptly foreclosed. The important elements of this “Wish” are to complete many of the important aspects of a person’s life. It addresses prior hurts and issues related to forgiveness. It addresses what a person’s want to be remembered for and what his/her life stood for. It addresses the person’s desire to influence how each family member goes on after his/her death. When a person is not given a chance to complete relationships or is not able to review of his/her life in order to write the ending in a personal way, there can be a great deal of anxious and suffering related to what is called “Narrative foreclosure”. For more information about this experience, please read the article called “Narrative foreclosure and ways to prevent it”.
In summary, the Advance Directive will give you an opportunity to complete your life on many levels with dignity, peace and comfort. You will get a chance to direct the care so it matches with what matters to most to you. You will be treated in ways that are unique to you. The Advance Directive is so much more than whether you want life-support treatment or whether you want a DNR ordered. It is about designing your death in a way that speaks to who you are and gives you a chances to “live well” even when dying.