Tag: end of life

When I Die, Recompose Me

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“The death care revolution has begun. It’s an exciting time to be alive.”

Katrina Spade grew up in a medical family. Her family did not shy away from conversations about death. While she ended up going into architecture, she did not stop having those important conversations. While in architecture school she became curious about what would happen to her body when she died.

In Katrina Spades Tedx talk in OrcasIsland she discusses the process of “recomposition” and her project that is centered around expanding a system where the deceased can be peacefully turned into rich soil that can be used to create new life.

The video of her talk can be found here. She begins by explaining that about 50% of American chose to be buried. This requires an immense amount of resources. Furthermore, in some areas cemeteries are running out of space. “It turns out it’s doesn’t really make good business sense to sell someone a piece of land for eternity.”

This has led to a sharp increase in the number of people choosing to be cremated. Today about 50% of Americans choose this option. People tend to think of cremation as a sustainable form of disposition. However, cremation burns away all the potential that a body can have in giving back to the world. “600,000,000 pounds of carbon dioxide go into the atmosphere every year from cremation.”

So, what are other options?

“In nature, death creates life”, says Spade. She wants to redesign death care. Based on a practice called “livestock mortality composting” that has been done in the farm industry for decades, she has helped create a system that replicates that process for humans.

“All we need to do is create the right environment for nature to do its job.”

Her goal is to create a facility that is “part public park, part funeral home, and part memorial for the people we love”.

In the human composting facility, there will be a tall vertical core. At the top of the core, friends and family of the deceased will lay down the body in a laying-in ceremony. They will cover the body in woodchips to create a carbon rich area around the deceased. This helps facilitate the natural breaking down of the body that will occur over the next few weeks. Microbes break down carbons and proteins and turns the body into rich earthy soil. “Eventually you could become a lemon tree”.

The facility will also provide space to support the grieving process, provide space for memorial services, and for end of life planning. Spade says she wants to create a space “where we create soil and honor life…we believe access to ecological death care is a human right.”

“The death care revolution has begun. It’s an exciting time to be alive.”

We’re Bad at Death. Can We Talk?

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“Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.”

Dhruv Khullar M.D. writes a moving piece for The New York Times about why it is important to have deep meaningful conversations about end of life before it is too late to do so. It has been increasingly acknowledged that many Americans would rather not go through intensive care and excessive hospitalization at the end of their life. It is not even clear that the aggressive medical care allows people to live any longer than if they choose not to go through it. The two things that have the biggest impact on improving end of life for individuals is “earlier conversations about their goals and greater use of palliative care services”. Unfortunately, people often put off these discussions until it is too late. Khullar explains that “Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care.” This is important because according to a 2011 Public Opinion report by the Center to Advance Palliative Care “the vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

It is important for people to understand what palliative care is. An improved definition has been described as “specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”

There seems to be a disconnect with what physicians tend to view palliative care as and what it really is. Many physicians tend to view it as synonymous with end-of-life care. This leads to certain patients not receiving the care they require because the illnesses may not be traditionally thought of as terminal, such as kidney failure (117,000 reported cases in 2013 in U.S., 89,000 die annually), or chronic obstructive pulmonary disease (15.7 million people currently diagnosed in U.S and was the 3rd leading cause of death in 2014 ). “Palliative care, with its focus on symptom control and holistic well-being, should be considered at any stage of a serious illness – not just at the end. Its use should be driven by patient need, not disease prognosis.”

Physicians and the public should understand that palliative care can be combined with treatment of a disease. We should all be more knowledgeable about these choices and understand there are options for people with serious illnesses. According to research done by the American Medical Association when having conversations about terminal illness nearly 70% of physicians] say they haven’t been trained to have this conversation and about half say they often feel unsure of what to say when discussing terminal illness.”

This needs to change. My husband and I came across this issue when he was diagnosed with both Alzheimer’ and laryngeal cancer, only six weeks apart from one another. End of life issues were never brought up. It was as if our doctors thought we had no choice. The neuro-psychologist said he had about three months of mental competency left and that we should get all our affairs in order. The throat surgeon said he had to have three invasive surgeries on his throat or else he would die a painful death within six to twelve months. That was the extent of our conversation with these professionals.

Legality Surrounding the Choice to VSED

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Death and dying feels like a messy matter at times. If we haven’t come to terms with our mortality, how can we even begin to think about and exercise our choices.

It is complicated and often intense to think ahead of time about how we want to die. Considering our choices requires deep introspection. For example, VSED is a complicated choice and it requires sufficient support. First the individual has to determine if it is right for him or her. Then loved ones have to support the individual’s decision. It takes time and effort to communicate with medical and legal people to ensure that everything will be carried out properly.

In this blog, I want to focus on the legal issues. I highly recommend that someone who is considering VSED consults with an elder law attorney. Do this well in advance. Not all elder law attorneys will be comfortable with or knowledgeable about VSED. We were fortunate to have a forward thinking elder law attorney. She knew much more about VSED than an estate planning attorney or a family law attorney.

The elder attorney will draw up documents to ensure that your wishes are followed and are within the realm of the law. In our case, my husband had his Health Directive that was filled out and updated as needed. Because he had Alzheimer’s and was still mentally competent, he filled out the Alzheimer’s Advance Mental Health Directive. This can be found on the End of Life Washington website. It is excellent, and it often requires the assistance of an elder law attorney.

My husband was certain that he wanted to avoid ever living in a dementia facility, but he only had so much control. If he landed in a dementia facility, however, we had already talked about our financial assets with our elder law attorney so that there would be money to take care of him and also money left for me. It can be very complicated. The Alzheimer’s Directive also covers decisions involving day to day choices about where someone would like to be treated and cared for. Different scenarios and options are covered in this fine Directive.

Here is a link to the Alzheimer’s Disease and Dementia Mental Health Advance Directive.

Many people ask me about the legality of VSED. Yes, it is a legal option in the United States. I strongly encourage you to look at the white paper written by Thaddeus Pope and Lindsey Anderson called “Voluntarily  Stopping Eating and Drinking: A Legal Treatment Option at the End of Life. It was this document that convinced my husband to VSED.

Another document that our elder law attorney drew up was a document to eliminate risk to the caregivers, the doctor and myself. I also filled out a similar document. Both were witnessed and notarized.

So, there is lots to think about. I encourage you to read my book, Choosing to Die. All the details are covered in the book. It is both a memoir and a guidebook.

A Better Way To Care For The Dying

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With advances in modern medicine people are living longer. The Economist article states

“People in rich countries can spend eight to ten years seriously ill at the end of life”.

Also 3/5 of current deaths come “after years of relapse and recovery.” What this brings to the current status quo is unnecessary pain and suffering for many elderly individuals and their families who do not have an end-of-life care plan. This issue comes not only from people’s challenge with having the difficult conversation but also with the medical profession. Susan Block of Harvard Medical School says “Every doctor needs to be an expert in communicating”.

Doctors tend to be overly optimistic about how long terminally ill patients have to live. This causes many to leave things unsaid and end-of-life wishes unwritten. Recently Americans have seen a rise in planning for treatment care in case of incapacity. However, we are far away from where we need to be. The medical profession as well as individuals must become better at dealing with the inevitability of death.

We can find our ways to deal with the inevitability of death.  Some of us may not find these ways. That is our choice. I learned a great deal observing my husband as he prepared for his death. He acknowledged that he was going to die soon and he dealt with unfinished issues in the last six months of his life. For him, he needed to resolve issues that he had with his mother who was no longer alive. With the help of a therapist, he was able to do this. This brought him deep peace. In addition, he and I met with a chaplain two months before he died. She has much experience in helping people, who are close to death, to prepare for their own. Alan was able to talk about the kind of death he wanted to have. Because he had chosen to VSED (voluntarily stop eating and drinking), he knew approximately when he was going to die. He planned the music he wanted to listen to. We talked about what people would be around him during this time. He talked about what his legacy would be to others. This two-hour conversation covered many issues.

Death By Design

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More people than ever are choosing to be cremated, yet crematoriums are often grim places.”

In America and Europe, the decision and demand to be cremated is growing faster than what the crematoriums are capable of handling. Yet everyone wants to have proper ceremony and decorum surrounding the death of a loved one. Dominic Nicholls writes the story of architects attempting to provide a suitable space where people can remember their loved ones after choosing to be cremated.“…Death is a part of life. Once we leave the Earth we are still part of the universe, and architecture can help connect the two.”

Companies like RCR and Sacred Stones are trying to create a new model for burial services to meet the rising desire for cremation. This currently comes in the form of a sleek looking room that provides intimacy and privacy, or iconic burial mounds found in Anglo-Saxon areas of Europe. Both ultimately give people the same thing. A place to quietly have a moment to reflect on the memory of the ones no longer with them.

Death By Design Article

Spiritual Beliefs are Important when Preparing for your Death

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Many religions accept death as a part of life or a state of transition. Discussing death as a part of life, being more accepting and educated about end of life care is something thinking about long before you die.  Write all your needs in your Advance health directive and talk to your health providers about it. We can all live our lives to the fullest and not fear death. Death occurs to everyone. It is simply a part of life.

 

If you are interested in different religious ideas around death, this is a great resource. By expanding our thinking cross-culturally we can understand death in more than our own way. Education is a key part of the dying process. By thinking about what occurs after death can make death more approachable. Even if you are not religious assessing your values and how you want to leave your body can affect your end of life decisions.

Reading about beliefs and aspects of other spiritual practices can help you identify how you see death and want to make your directive for end of life.

http://lmrpcc.org.au/admin/wp-content/uploads/2011/07/Customs-Beliefs-Death-Dying.pdf

Loddon Mallee: Regional Palliative Care Consortium

Honoring Dementia Patients In End Of Life

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It is challenging to talk about end of life options with someone who already has dementia. If they are in the early to mid stages of dementia and are still mentally competent this article will help guide you to have better conversation with your loved one. Discuss how the person with dementia thinks about death. How do they see themselves passing? If a health directive has not been completed yet, it is essential to do so now. All wishes should be written down so that when the time comes, all of the loved ones and caregivers are on the same page.

Because my husband and I had so much conversation about his end of life choices, he had a peaceful passing.

Because my husband and I had so much conversation about his end of life choices, he had a peaceful passing. He had a thorough health directive at the time of his death. He had the Alzheimer’s Disease and Dementia Advance Directive  (End of Life WA state).  We were well informed. Different states have different requirements for end of life papers. There are many sites that will help you find the right directive for you in your state.

For more explanation and details about my husband’s personal passing the section Alan’s Transition on my website .

We’re Not Too Young

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As newly weds it was important to have a discussion about what matters most at the end of life so we can make the right decisions for each other when the time comes

I hope that someday everyone fills out a health directive when they become an adult at 18. Our parents are legally responsible for us in the United States until then. At 18 ideally everyone should fill out a health directive. If you don’t do this and you are in an accident or get a terminal disease doctors and hospitals have a the legal right to make all decisions for you. Your health directive ensures that your loved ones will be able to represent you and your wishes. I filled out my first health directive when I was 40. I still didn’t believe I was going to die someday. I know It is challenging to think about a health directive when you think you are immortal. They vary from state to state, but what is important is what you write. Nevertheless, we are all going to die and we all want to have a good death. We are all familiar with death and through figuring out what what state we want to live into is something only you can decide. That is why preparing is important even when we are young and do not think about death.

A touching story of two Newlyweds 

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

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When my husband was diagnosed with Alzheimer’s disease, instead of living into the late stages, he chose to vsed. I was his advocate. We discussed everything. He had excellent support. In order for my husband to have a good quality of death there was a lot to talk about. Being able to comfortably talk about end of life is essential in order to prepare for a good quality of death.. Informing ourselves and others without judgment is key to living a good life and having a good death. Cultivating support systems will help yourself and others.

This article reiterates the difficulty of discussing end of life with someone in every stage of Alzheimer’s disease and how you can try to communicate how they want to leave their body

The Conversation Project is a great resource for end of life preparation and support.

How to Talk about End-of-Life Care When a Loved One Has Alzheimer’s Disease

Why Aren’t We Talking About It?

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I wrote my first Health Directive when I was forty years old. It felt uncomfortable. Now it feels so routine when I update my Health Directive because I’ve exercised the muscle of learning about end of life choices. I acknowledge that death is a certainty and an extension of life.

Maybe someday everyone will fill out a basic Health Directive when they get their driver’s license. Once we turn eighteen years old, if we don’t have a Health Directive, we turn our power over to the medical profession to make decisions for us. By talking about our values and wants with loved ones we can pave the path to a more conscious way of dying. 

The conversation project is also a great resource for discussing end of life choices.

http://theconversationproject.org/