My essay due this week was on end of life care. Our directions stated that we had to look at the Five Wishes website make our choices and write our personal response to doing this. Well Five Wishes is advance directives for end of life and I am fighting the school about them making protected medical information a required part of our homework. Where it stands right now is that I will loose points for not following directions because my paper doesn't contain my personal choices.
This is part of the email I sent making my case.
I wrote a paper that covers end of life care and the options available but I did not include my personal choices. What are your thoughts? Would you share your personal choices with a professor you have never met in a paper? Have you thought about your end of life care? Does the school have the ehtical right to demand that people share their very personal private information? Do you think this is personal private information?
I concluded my case with these words.
And here is the paper I handed in, what do you think does this cover the topic or have I lost some learning by not including my choices?
End of Life Directives
Life is fragile from the moment we are born we are on a journey towards our death. We may live to be one hundred or, we may suffer an accident that takes our life at a young age. Our time here on earth is limited, but how limited is unknown to us. A person with a terminal illness may be involved in a motor vehicle accident that takes their life unexpectedly. Even when we think we know, in truth, we do not. This is why advanced planning is important. Knowing what you want and having directives in place if you are unable to speak for yourself is important for each person and for their family.
Guilt can complicate the grieving process, and when a decision maker has to guess at the wishes of a loved one, guilt over, “Did I do the right thing?” is often a byproduct. I said before that death could happen at any age the same is true for tragedy and not all tragedy ends in immediate death. There is a family struggling with these issues as I type this paper.
(edited details not that there were a lot to begin with but this is a blog) He is unsure what is best, relying on the doctors, nurses and family friends to help him make the best choices possible for his little sister. I would be willing to bet that these young people never considered having a conversation about what each would want should tragedy happen to them. Teenagers and young adults do not think things like this can happen to them, they think they are invincible, or that death is a half a century away and they do not need to think about it for a very long time. The problem is tragedy or illness could strike them too and sometimes it does. This is why planning is important for all ages not just the elderly.
There are many tools around to help people document their end of life choices. Some of these tools are complex and written in legal or medical language. Some are too simplistic and may not be legally binding in your state. Regulations vary from state to state and it is good to know what your state requires. The tool I recommend for most people is Five Wishes, an advance directives form that is simple to use but covers all of the important areas that need documentation. It is a wonderful tool to help families sit down and talk about what each person would wish before an emergency comes up. Five Wishes is legally binding in most states and the few where it is not a legally binding most doctors would honor what is on the form because they understand the importance of end of life choices and the importance of dignity in death.
End of life choices are not easy to make and each person needs to make the choices that are right for them. Five Wishes explains the pros and the cons clearly in everyday language making them easy to understand for all.
The first wish tackled is who will speak for you should you be unable to speak for yourself. This person needs to be someone that you trust quite literally with your life, who would honor your wishes even if they do not agree with them. Chose a person who loves you but is also an emotionally strong person able to make difficult decisions and would be able to stand up to other family members if they disagree with your choices. Along with naming the person or people you would want making your choices it is also a good idea to add a HIPAA (Health Insurance Portability and Accountability Act) release allowing your doctor to share your medical information with your chosen voice. If the release is in the hands of your designated person along with your Five Wishes forms then there is no cause for delay in information being shared, without the HIPAA release precious time could be wasted while it is determined if the person you chose can be told your confidential information.
Wishes two and three are the nuts and bolts of end of life care. What medical interventions do you want and how comfortable do you want to be? There are many important things to consider about the medical interventions, each has pros and cons. The first thing I would recommend thinking about is pain, how much pain is too much pain for you to tolerate? If you are very sensitive to pain then you may choose medication to the point where you are not experiencing pain, but the medication will affect how alert you are and your ability to communicate with your loved ones. Another common medical intervention for consideration is feeding tubes. A feeding tube can keep a coma victim alive indefinitely. Once a feeding tube is started getting it removed can require a court order. A person can be brain dead but their body is alive and fed, but to not start a feeding tube when a patient is in a coma means that in time, the patient will starve to death if they do not wake up. What criteria for allowing or not allowing the placement of a feeding tube and at what point you would want the tube pulled is important to document ahead of time. Ventilation is another important medical intervention that when to use it and when not to use it must be weighed carefully and documented in advance. Depending on your condition the vent can be an aide that saves your life giving your body a chance to heal allowing you to recover and breath on your own, but it also can prolong the life of the body long after the brain is gone. Everyone has the right to choose not to be resuscitated. Many people who are elderly or chronically ill exercise this right. If this is your choice, I recommend that you have a medical alert tag for DNR (Do Not Resuscitate), having an alert tag informs first responders of your choice and allows them to know how to care for you according to your wishes. They will not start interventions that you would not wish to have.
Wish four, contains the directives for how you wish others to treat you and maintain your dignity. Do people bring you comfort or do you feel ill at ease when around a lot of people? Do you want your faith community notified and people praying for you and visiting you? Knowing these things about yourself and documenting them will allow your nurses or your caregiver to limit your visitors or encourage visitors to stay longer and come again. Another thing to consider in this section is whether you wish to be at home or in the hospital. In most cases, it is possible with the help of a home hospice for you to go home and kept comfortable. The most important thing about your end of life is your comfort with it. There is such a thing as a “good” death and many health care professional strive to help everyone in his or her care have a “good” death. Advanced directives help them help you achieve the goal of a good death.
Wish five is the most important wish in my opinion. It is all about the things you want your loved ones to know before you die. It is a reminder to them that you loved them or a chance to ask for forgiveness if there is something left unfinished. The fifth wish handles how you want people to remember you and what type if any memorial or funeral services you wish to have.
Five Wishes is comprehensive while being easy to follow and understand. Most sections have boxes to check off what you want or cross out what you do not want, making this tool perfect for most people. I personally did not use Five Wishes, my situation is too complex and I need documentation that is more detailed. Several years ago, it was clear to me that I needed to make my advance directives. The process of making and setting my choices took me awhile. I did not want to face my own mortality at that point. I carefully weighed the pros and cons for each choice I made and many of them I talked over with the person I designated as my medical power of attorney. I have to say the process was a hard one but I am very glad that I did it. No one wants to face mortality but when I finally finished documenting my advance directives, I had a sense of peace. I know that those details are safe; my voice will speak for me and stand up for my wishes. She will do everything in her power to make my death a “good” one. I wake up each day and live it to the fullest, no longer worrying about the details of my death. I do not know when my Lord will call me home but what I do know is when he does I am ready.
This is part of the email I sent making my case.
Five Wishes is a legally binding advance directives document. I realize that we are not filling out the actual forms and our assignment is not legally binding but the information you are requiring is our advance directives, which are most definitely covered under HIPAA. Part of the problem is you are not bound by HIPPA and if you chose to share those you could. I don't think you will or would but it is a possibility. Part of planning for end of life includes decisions about whether or not I want feeding tubes, the degree of pain management verses compromised alertness, potential ventilator use, etc. How much medical intervention I want to allow at my end of life is my medical information, mine to choose who I share it with. HIPAA and the Self Determination act are acts of Congress they are there to allow the freedom of choice but also to protect us from who can require this information. Only those with an absolute need to know are permitted access to this information The students comprehension of the material is not dependent upon them reveling their personal choices for end of life care. I have had numerous conversations with people about the pros and cons of the options available for end of life care without revealing my personal decisions. I can educate people in making their own choices without sharing what I have chosen. Education in this class can happen without requiring that we share our personal details.
I wrote a paper that covers end of life care and the options available but I did not include my personal choices. What are your thoughts? Would you share your personal choices with a professor you have never met in a paper? Have you thought about your end of life care? Does the school have the ehtical right to demand that people share their very personal private information? Do you think this is personal private information?
I concluded my case with these words.
This is a real ethical dilemma for me. There is nothing simple about it. If the ethical dilemma cannot be seen by you or the psych department then I am not sure that I want to learn my ethics from this school. I will write a paper. My paper will show that I understand the material and be comprehensive, but it will not include my personal choices. If my grade has to suffer for it then so be it. In the fabled words of Martin Luther, "Here I stand, I can do no other."
And here is the paper I handed in, what do you think does this cover the topic or have I lost some learning by not including my choices?
End of Life Directives
Life is fragile from the moment we are born we are on a journey towards our death. We may live to be one hundred or, we may suffer an accident that takes our life at a young age. Our time here on earth is limited, but how limited is unknown to us. A person with a terminal illness may be involved in a motor vehicle accident that takes their life unexpectedly. Even when we think we know, in truth, we do not. This is why advanced planning is important. Knowing what you want and having directives in place if you are unable to speak for yourself is important for each person and for their family.
Guilt can complicate the grieving process, and when a decision maker has to guess at the wishes of a loved one, guilt over, “Did I do the right thing?” is often a byproduct. I said before that death could happen at any age the same is true for tragedy and not all tragedy ends in immediate death. There is a family struggling with these issues as I type this paper.
(edited details not that there were a lot to begin with but this is a blog) He is unsure what is best, relying on the doctors, nurses and family friends to help him make the best choices possible for his little sister. I would be willing to bet that these young people never considered having a conversation about what each would want should tragedy happen to them. Teenagers and young adults do not think things like this can happen to them, they think they are invincible, or that death is a half a century away and they do not need to think about it for a very long time. The problem is tragedy or illness could strike them too and sometimes it does. This is why planning is important for all ages not just the elderly.
There are many tools around to help people document their end of life choices. Some of these tools are complex and written in legal or medical language. Some are too simplistic and may not be legally binding in your state. Regulations vary from state to state and it is good to know what your state requires. The tool I recommend for most people is Five Wishes, an advance directives form that is simple to use but covers all of the important areas that need documentation. It is a wonderful tool to help families sit down and talk about what each person would wish before an emergency comes up. Five Wishes is legally binding in most states and the few where it is not a legally binding most doctors would honor what is on the form because they understand the importance of end of life choices and the importance of dignity in death.
End of life choices are not easy to make and each person needs to make the choices that are right for them. Five Wishes explains the pros and the cons clearly in everyday language making them easy to understand for all.
The first wish tackled is who will speak for you should you be unable to speak for yourself. This person needs to be someone that you trust quite literally with your life, who would honor your wishes even if they do not agree with them. Chose a person who loves you but is also an emotionally strong person able to make difficult decisions and would be able to stand up to other family members if they disagree with your choices. Along with naming the person or people you would want making your choices it is also a good idea to add a HIPAA (Health Insurance Portability and Accountability Act) release allowing your doctor to share your medical information with your chosen voice. If the release is in the hands of your designated person along with your Five Wishes forms then there is no cause for delay in information being shared, without the HIPAA release precious time could be wasted while it is determined if the person you chose can be told your confidential information.
Wishes two and three are the nuts and bolts of end of life care. What medical interventions do you want and how comfortable do you want to be? There are many important things to consider about the medical interventions, each has pros and cons. The first thing I would recommend thinking about is pain, how much pain is too much pain for you to tolerate? If you are very sensitive to pain then you may choose medication to the point where you are not experiencing pain, but the medication will affect how alert you are and your ability to communicate with your loved ones. Another common medical intervention for consideration is feeding tubes. A feeding tube can keep a coma victim alive indefinitely. Once a feeding tube is started getting it removed can require a court order. A person can be brain dead but their body is alive and fed, but to not start a feeding tube when a patient is in a coma means that in time, the patient will starve to death if they do not wake up. What criteria for allowing or not allowing the placement of a feeding tube and at what point you would want the tube pulled is important to document ahead of time. Ventilation is another important medical intervention that when to use it and when not to use it must be weighed carefully and documented in advance. Depending on your condition the vent can be an aide that saves your life giving your body a chance to heal allowing you to recover and breath on your own, but it also can prolong the life of the body long after the brain is gone. Everyone has the right to choose not to be resuscitated. Many people who are elderly or chronically ill exercise this right. If this is your choice, I recommend that you have a medical alert tag for DNR (Do Not Resuscitate), having an alert tag informs first responders of your choice and allows them to know how to care for you according to your wishes. They will not start interventions that you would not wish to have.
Wish four, contains the directives for how you wish others to treat you and maintain your dignity. Do people bring you comfort or do you feel ill at ease when around a lot of people? Do you want your faith community notified and people praying for you and visiting you? Knowing these things about yourself and documenting them will allow your nurses or your caregiver to limit your visitors or encourage visitors to stay longer and come again. Another thing to consider in this section is whether you wish to be at home or in the hospital. In most cases, it is possible with the help of a home hospice for you to go home and kept comfortable. The most important thing about your end of life is your comfort with it. There is such a thing as a “good” death and many health care professional strive to help everyone in his or her care have a “good” death. Advanced directives help them help you achieve the goal of a good death.
Wish five is the most important wish in my opinion. It is all about the things you want your loved ones to know before you die. It is a reminder to them that you loved them or a chance to ask for forgiveness if there is something left unfinished. The fifth wish handles how you want people to remember you and what type if any memorial or funeral services you wish to have.
Five Wishes is comprehensive while being easy to follow and understand. Most sections have boxes to check off what you want or cross out what you do not want, making this tool perfect for most people. I personally did not use Five Wishes, my situation is too complex and I need documentation that is more detailed. Several years ago, it was clear to me that I needed to make my advance directives. The process of making and setting my choices took me awhile. I did not want to face my own mortality at that point. I carefully weighed the pros and cons for each choice I made and many of them I talked over with the person I designated as my medical power of attorney. I have to say the process was a hard one but I am very glad that I did it. No one wants to face mortality but when I finally finished documenting my advance directives, I had a sense of peace. I know that those details are safe; my voice will speak for me and stand up for my wishes. She will do everything in her power to make my death a “good” one. I wake up each day and live it to the fullest, no longer worrying about the details of my death. I do not know when my Lord will call me home but what I do know is when he does I am ready.
posted by Chris | 10:42 PM
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