“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation.” — Atul Gawande, On Being Mortal
We all know death will win in the end. Yet, talking about death, especially when to stop fighting it, rarely happens. In my work with people diagnosed with dementia, I have seen what happens when we avoid unpleasant conversations and end of life issues sneak up on us. Not making any decision becomes a decision of its own — the decision not to have control over your end of life experience. Then a guessing game ensues and the burden falls on loved ones.
Thankfully, we do have some control over our end of life experience. We can put our wishes into writing so that one day, if we are unable to be heard, our wishes are known. No matter what age you are now, having clear wishes can drastically increase quality of life in your final chapter.
First: Decide when you believe life ends.
For many years the adage “blood goes round and round and breath goes in and out” was used to determine if a person was alive in the medical paradigm. Now machines can carry out these tasks and a new definition of death is emerging — brain death.
Philosopher Peter Singer gives a thorough overview of this dilemma in his thought-provoking book “Rethinking Life and Death”
One important distinction Singer makes is the difference between a body and consciousness. Paraphrasing Dr. Neil Campbell, he wrote:
“What we really care about — and ought to care about — is the person rather than the body. We may respect a dead body, but our concern should be for a conscious being.”
Second: Research the laws in your state and get the appropriate documentation to ensure your beliefs are respected.
Decide who you want to make your final decisions — medical, financial etc., if you are unable. You may want to select someone who is not closely tied to you emotionally, but who you still trust. Having to make these decisions may prove difficult and burdensome for those closest to you. A lawyer can help and there are many organizations created for this purpose. For example, I used CompassionateChoices.org, which has links to each states’ end of life care paperwork.
Third: Write “Care and Handling” instructions for yourself.
Imagine you are in a state (physically or mentally) where you cannot communicate your wishes. How would you like to be treated? Think about things in your daily ritual, and what brings joy and comfort to your life.
For example:
- Do you always like to have a drink before dinner?
- How do you take your coffee?
- How do you like to sleep? On your back, side etc.?
- Are there certain songs which elicit strong emotions for you?
- Are there scents that bring back certain memories?
- Do you prefer a shower or a bath?
- How often do you wash your hair?
Many times when I was called in for psychological consultation because a resident was upset we found the culprit to be not “agitation or aggression,” which are often labeled as “behavioural” symptoms of dementia but rather some little thing in their routine which was easily adaptable. Again, write these things down and make sure they are kept with your other wishes.
We each have rights over our own life and it’s quality. We each have the responsibility of examining end of life issues and coming to an opinion we can stand behind.
Need more inspiration? Check out this Planet Money post on the surprising economics of how end of life planning could be the solution to our health care cost crisis.
Hello. I’m currently an AGNG 320 student with Erickson Aging and I agree with your post. The subject of aging is something that society avoids discussing because people in general do not want to think about the fact that they will die someday. Preparing and planning for death is something that everyone should do at different steps in life. I agree with your first point which is deciding when life ends. The adage that was mentioned can no longer be used to decide when exactly life ends because there are machines that are capable of doing that. It is important to inform friends and family of plans in case something unlikely happens. Would you want to be kept alive by ventilators or would you want to be let go. This is very important because this is a topic we have discussed in class. According to a youtube video, “The cost of Dying: End-of-Life Care”, Medicare paid 55billion dollars for doctor and hospital bills during the last 2 months of the patients life. And in most cases, the treatment had little to no impact. In this case, the life of the patient was just being prolonged rather than family members letting them go. This is why it is important to prepare instructions on what type of care you would want if something happened.
Hello. I’m currently an AGNG 320 student with Erickson Aging, and I agree with your post. Your third step was very thoughtful and I think that all people should follow that step. Your blog relates to what we are currently learning in class. According to Haber hundreds of thousands of older adults die in nursing homes each year. In relation to your third step, Haber mentions long-term care alternatives like smart homes, virtual villages, and greenhouses. I think that in addition to the patient’s daily routines, the patient should write down where they want to live as well as how they want to be buried.
Hi,
I am currently an AGNG 320 student at the Erickson School of Aging. I enjoyed reading your post. Death is a topic that we as a society avoid talking about, but goes hand in hand with health aging. In our first week of class we each had to define what we believed healthy aging meant to us and I think part of that has to come with accepting death, so that is why I was drawn to this post. This post has taught me the ways in which we can accept death, thus also allowing ourselves to healthily age. Promoting healthy aging is older adults is important and the hardest fact to face is your first point: deciding when we believe life ends. Just because you’re older doesn’t mean that is when you should start thinking about death, and society needs to understand that.
Hello, I am currently an AGING 320 student at the Erikson School Aging and I totally agree with the message of your post We all know that death is inevitable, yet as a society we act like it doesn’t exist and avoid the topic of death like a plague. I agree as you stated in your post, we need to become comfortable with the topic of death as it will win in the end. We need to stop avoiding it and making it the enemy when it is just apart of the nature progression of life. I love the proposed three steps that was mentioned in your post. I think we tend to wait until its too late to talk about our wishes in how/ when we die when we are close to the end, when as you mentioned in the post we should start preparing at any age. Death can happen at any time, and it is better if we can prepare for it whenever it comes. Most things that was mentioned made me think about the concepts sin in my class. For instance, the third step “Write “Care and Handling” instructions for yourself” related to the sections in the chapter that spoke about end of the life care. I think in preparing for this third step, people should think about the multiple options they have such as hospice care and whether if they feel that is something they would want to have. Another aspect of this third step, is thinking abut how you would like to be burial. Haber talks about green burials and cemeteries, this is something that I think could have noted in your third step.
– Thanks Chia
Right away I am going away to do my breakfast, once
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Hello. I’m currently an AGNG 320 student with Erickson Aging and I couldn’t agree more with the points you make in your article. It’s often hard to find the place to discuss the process of dying, but it’s important to recognize that as someone reaches that stage, there is a chasm of difference between adequate and inadequate care. It’s not as if the distinction is negligible. We’ve learned through studies such as Henry, Alive Inside that the personalities and personal fulfillment of aging adults, even with dementia, is preserved and can be expressed and pleasure restored to those individuals. So ignoring the preparation for such an important time is tantamount to not planning out your college years. It’s absolutely vital for people about to take this step to understand the laws that pertain to them as this process unfolds. Medical directives and power of attorneys shouldn’t be taken lightly and without an informed decision about these matters, it can be easy for the plan to go awry. As Haber says, knowing about each jurisdiction’s policy on Death with Dignity is important. Outcomes could be devastated by a lack of information on the senior’s part. All of these tasks are meant to simplify the work of caregivers and medical professionals in providing the necessary quality of life to the senior. I find it marvelously simple that you suggest outlining a daily regimen for them to follow. It’s a wonderful thought. Why not be precise about exactly what you want?
Hello Kyrié,
My name is Maha Khan and I am an AGNG 320 student at the Erickson School of Aging. I enjoyed reading your blog post and learning how instrumental it is to prepare for death regardless of age. One major thing you emphasized within your three points was writing handling and care instructions for oneself. Immediately, my mind went to things such as if one was in a terrible car accident and needed to be put on a breathing machine. Your point focused on much simpler things such as knowing how one takes their coffee and in which position they prefer to sleep. I’m sure the option of being put on a breathing machine or not is very important too, but these simpler issues should be given some importance as well. I really appreciate that you included this in your three steps. In this weeks AGNG 320 lesson, we learned about Hospice Care which includes a family focused style of care that provides comfort while one is approaching death. Step three of your tips would be very helpful in hospice care because as the person is approaching death, it would be handy for the hospice staff and support have a guide of the person’s preferences. Although they may still be able to communicate while on hospice, the supporters having a physical guide of the patient’s preferences prepared beforehand would be super helpful.
– Maha
Maha,
Thanks for your thoughts. I do indeed think both the big decisions ( what medical interventions one wants) and the smaller things ( daily quality of life ) are important. I also think that it is important to think about your wishes early and often we never know when we will not be able to communicate our wishes and it is important to have them known.
Thank you so much for sharing this article! I am currently an Aging 320 student at the Erickson School of Aging. Everyone will experience death at some point in their life but many people have the conception that death usually comes when they have reached an old age and will die naturally. At a young age, we usually do not think about other ways that we can die such as due to car or construction accidents, diseases, homicides, or a random heart attack while sleeping and many people avoid this topic because it may be taboo. My aging course at UMBC focuses on promoting health in older adults and we also discussed end of life care for adults who are in a terminal condition, end stage condition, or persistent vegetative state in the hospitals or nursing homes. The article also mentioned to get the appropriate documentation to ensure your beliefs are respected. In this week’s discussion, we learned about advance directives, which is a written statement of a person’s wishes regarding medical treatment when they are unable to talk to their doctor. This is so important and more people in society should be able to freely talk about death and understand that they should convey their wishes with their family, hire a health care agent, and prepare an advance directive. As the article stated, this is to ensure that their treatment or lifestyle is handled based on the written documentation in the situation that the patient is unable communicate or make health care decisions.
Jessica,
You are spot on the taboo of talking about death stops us from having important conversations that dramatically change our quality of life at its end.
Kyrié
Hi Kyrie,
I am a student studying AGNG 320 at the Erickson School of Aging. I found your topic to be interesting as people usually tend to only talk about life and try to stray away from talking about death as if avoiding talking about might just prevent it. The preparation of the inevitable death is something people have been starting to take care of recently with an early life insurance and such. However, it is still a stigmatized topic and people need to open up and talk about death like we do about life. Keeping the possibilty of unfortunate events that might lead to death in mind, one must direct how things must go while they can.
Simanta,
You are spot on. Check out http://www.yg2d.com. Orgs and events like this are really helpful in starting the conversation about death.
I am so happy to have found your site. I printed out all of your documents for myself, but I will also post your information on my website for my readers. My site is for women over 50 on the topic of aging.Thank you for this wonderful information.
Awesome! Keep up the good work Sharon, we need as many voices as possible in this conversation if we are to galvanize a movement.
What an important topic! I am an AGING 320 student at UMBC’s Erickson School of Aging. My current course focuses on health promotion in the older population, and end-of-life care inevitably comes up. I believe our country also just needs to have a culture change around death too. Death is naturally a tough conversation to have, but as it is unavoidable, our society should be more open to talking about it. Our conversations should be on how we want to die and our values. It is unfortunate the conversation has been politicized as “death panels”. One uplifting example though is La Crosse, Wisconsin where 96% of the elderly population as an advance directive. Residents are more open to talking about death, and while not the goal, that county spends the lowest on end-of-life care in the country.
Hi! I really enjoyed reading this post. I’m an AGNG 200 student at the Erickson School of Aging, and we’re learning about end of life care right now in class. For me, I’m 24 but I’m constantly worrying about dying and I think about it a lot. I keep trying to make peace with it but I’m not sure how to stay as calm as you are about it! One of the things that we talked about in class that sort of goes with your blog post is the fact that all people, no matter what their age, deserve to be treated with kindness and respect. One of the theories that we learned about was rationing health care for those who are older. I disagree with that mentality so much. I think that if everyone did what you suggested, and thought about putting themselves in another’s shoes, end of life care would be just as inclusive and important as healthcare for those who are younger. We can’t control the fact that we’re going to die (although I wish we could), but we can control how we set ourselves up for our inevitable aging. Thanks for your post!
Thanks for the thoughtful piece, Kyrie. Note: I want massages!
Stepping off the hamster wheel of age denial and acknowledging that we’re getting older paves the way for the kinds of reckonings you recommend.
Ashton
Thanks Ashton! Duly noted (on the massages). xoxox
From your writing “We all know death will win in the end”. Wrong, “death” is not a living thing, it is simply the end of life. It is this inattentiveness that makes me skip articles like this.
Death is a key issue in my life now that my father was diagnosis with prostate cancer. I feel helpless as the oldest child because my father is so depressed and stressed out of what will become of my mother when he dies and I am so tired of trying to motivate him out of his depression and worries. I know I cannot quit on him but it is taking an emotionally total on me. Also, my reality regarding my disability has changed my perspective on creating a living will in case I die from it and I am trying my best to be positive but it is really hard when I know it could happen anytime. Economically I am not prepared for either my father’s or my death at all. I have done some research on what it takes financially to afford a decent funeral and I prefer to be creamated, so I do not leave my immediate family with a huge financial burden. As for my father who is being selfish regarding his funeral, he prefers to be buried in a casket and a reception with a musical band and huge celebration regardless knowing I cannot afford it. Hopefully, with God’s good grace I find a good paying job when I graduate from university to afford a decent funeral for my father.
Marlene,
Thank you for sharing your story. My heart goes out to you and your family. I want to encourage you to seek support from your community in this hard time. You do not have to carry all of this alone. Some resources you can look into are counseling centers in your area to support you and your father, most offer sliding scales where you can get services for little to no cost. Here is a directory of non-profits that can help with funerals http://funerals.org/affiliates-directory/ Hospice is an amazing resource at the end of life as well. There are also many amazing online communities where you can be supported by others in similar situations to yourself. We are interdependent beings and getting support from our communities can make a world of difference in our suffering.Please know you are not alone, there is help and hope and support. Thank you for sharing and I sincerely wish you all the best.
A wonderful article, Kyrie. You bring such a calm, common sense approach to this sensitive topic. Thank you!