Tuesday, February 23, 2016

Medical and Legal End of Life Care Talk With Your Doctor - AARP

This article is a good, clear, comprehensive outline of the questions you will need to answer and the documents you will need for an end of life talk with your doctor, including an advanced directive and health care proxy.

"If your doctor doesn't initiate an end-of-life talk with you, here are some ways to get one started and some of the topics you should cover. In addition, there are important legal documents that you will need to make your decisions binding."

Medical and Legal End of Life Care Talk With Your Doctor - AARP:

Monday, February 22, 2016

Going green in life and deathThe Amateur's Guide To Death & Dying | The Amateur's Guide To Death & Dying

"There’s a quiet revolution under way in the American death industry, moving towards a future in which natural composting, water cremation and even a so-called ‘mushroom death suit’ might be as socially acceptable as conventional coffins and cremation. Current burial practices pose significant environmental risks. To counter their effects, a group of funeral professionals, artists and academics have started proposing eco-friendly alternatives. But the endeavor requires engaging a normally death-phobic public in a wider discussion about dying as a natural process — something rebel mortician Caitlin Doughtystrives to do. Doughty, a Los Angeles undertaker with a self-confessed “proclivity toward the macabre,” is the founder of the aforementioned group, which she calls The Order of the Good Death. It’s about trying to lift the “veil of secrecy and shame cloaking death,” she writes in her best-selling book Smoke Gets in Your Eyes: And Other Lessons from the Crematory. “A culture that denies death is a barrier to achieving a good death,” she says. For her next book, Doughty is exploring the idea of eco-friendly death practices because she believes current practices are unsustainable. “This is about the future of the dead body and its disposition,” she says."

Going green in life and deathThe Amateur's Guide To Death & Dying | The Amateur's Guide To Death & Dying

Sunday, February 21, 2016

What Luck Means Now -- Joyce Maynard

"Luck" means something different when severe illness eliminates so many choices and opportunities. Joyce Maynard writes poignantly about waiting for news of her husband's surgery.

I arrived a little after 6 a.m., after kissing my husband goodbye before they wheeled him into surgery. The surgery is expected to take 12 hours, though somewhere around Hour 3 the surgeon will have gotten to the place in Jim’s abdomen where he can see the tumor, known to us only as an innocuous-looking gray area on Jim’s CT scans. Sometimes this turns out to be the moment when the surgeon discovers the tumor is not operable after all, in which case they stitch everything up and say, “We tried.”

The tumor in question (I haven’t allowed myself to call it “Jim’s tumor”; I don’t want to see him take ownership) is 2.5 centimeters in diameter and located in the head of Jim’s pancreas. For my husband to survive — to have a shot at survival — this tumor must come out.

The operation calls for the removal of part of Jim’s pancreas, his gall bladder, his duodenum and parts of his small intestine and stomach. “Picture gutting a fish,” Jim, a fly fisherman, said to a friend. “That’s roughly the idea.”

It’s odd to say of an operation like this that a person is lucky to be receiving it, but Jim and I do feel lucky. Seven months earlier, when we went to the doctor, anticipating gallstones, we learned the tumor was probably inoperable.

“There’s a surgery that gives you a shot,” Jim’s doctor told us. (A shot. Just that. But suddenly a shot was everything.) “It’s called the Whipple Procedure.”

From that moment, our focus had become shrinking the tumor to where Jim could get the Whipple. And after eight rounds of chemotherapy and two of radiation, the day has come.

Saturday, February 20, 2016

Atul Gawande’s 5 Questions to Ask at Life’s End – Next Avenue

"We need to know:   1. What is your understanding of where you are and of your illness? 2. Your fears or worries for the future 3. Your goals and priorities 4. What outcomes are unacceptable to you? What are you willing to sacrifice and not? And later, 5. What would a good day look like?   Asking these allows everybody to understand what the goal really is — what are you really fighting for? It’s for a life that contains certain things."

Atul Gawande’s 5 Questions to Ask at Life’s End – Next Avenue

A Neighbor's Empathy Makes The Pain Of Grief Bearable : Shots - Health News : NPR

"[E]mpathy is pain's best antidote. It is, says Robert Burton in his astonishing Anatomy of Melancholy, "as fire in Winter, shade in Summer, as sleep on the grass to them that are weary, meat and drink to him that is hungry or athirst." The pain doesn't go away; but somehow or other, empathy gives the pain meaning, and pain-with-meaning is bearable. I don't actually know how to say what the effect of empathy is, I can only say what it's like. Like magic."

A Neighbor's Empathy Makes The Pain Of Grief Bearable

Friday, February 19, 2016

Royal College of Art students collaborate with London hospice to 're-style' the experience of death | Features | Lifestyle | The Independent

Designing a welcoming, supportive environment for those who have little time and want to make the most of it as comfortably as possible.
"The biggest shocker for me was the significance of distraction," Jones says. "We couldn't figure out why patients were constantly gathering around a television to watch game shows. By talking to them, we discovered that the distraction it offered was the source of its appeal. When we realised this, we began exploring options for other forms of distraction and interaction."

Royal College of Art students collaborate with London hospice to 're-style' the experience of death | Features | Lifestyle | The Independent:

Complicated Grief: Reframing the Way We Think About Love and Loss

"Grief is both a universal experience and a unique one. Like the love that spawns it, grief is unique to each bereaved person.

P.J.’s family appear to be solidly grounded in a comforting belief system and enveloped in a supportive secular and spiritual community. They still seem able to envision a meaningful life.

But many bereaved people feel deeply confused, emotionally unsettled, and profoundly isolated in the acute aftermath of a loss. The isolation and confusion is intensified by our cultural aversion to conversation about loss and death and by uncertainties about what to expect in grief.

I believe that grief is neither a brief reaction to loss that can and should be quickly resolved, nor is it so completely unique that any form it takes should be welcomed and validated as suggested by the maxim that everyone grieves in their own way.

Scientists who study close relationships define them as providing comfort during times of trouble and encouragement during times of learning, taking risks, and performing. There is a lot of evidence that we are biologically predisposed to seek, form, and maintain such relationships and to adjust to their loss.

Grief is the response to loss but it is not one thing. It is different for different people and for the same person over time. Grief entails a changing array of thoughts feelings and behaviors evoked by the loss. Emotions often surge in ways that can feel unfamiliar, unpredictable, and confusing, As C.S. Lewis famously said, “No one ever told me grief felt so much like fear.” "

Complicated Grief: Reframing the Way We Think About Love and Loss - Pacific Standard

Stages Of Grief, Signs, Symptoms Grief And Loss | HealGrief

"Grief is personal and individual, and every person experiences its nuances differently. Your personality, your support system, your natural coping mechanisms and many other things will determine how loss will affect you. There are no rules, no timetables, and no linear progression. Some people feel better after a few weeks or months, and for others it may take years. And in the midst of recovery there may be setbacks — this nonlinear process can’t be controlled. It’s critical that you treat yourself with patience and compassion and allow the process to unfold. If you take nothing else from this section, please remember this: treat yourself with kindness, compassion and without judgment. You have the right to grieve, and no one — including yourself — can tell you when it’s time to end that process."

Stages Of Grief, Signs, Symptoms Grief And Loss | HealGrief:

What to Do When Someone Dies

This British booklet has some advice that is very specific to Great Britain, but some that is universal: The death of a loved one presents many challenges; and there are many decisions and arrangements you will have to make, at such a difficult time. You may feel numb, or find it difficult to believe what has happened. You may feel relief that the person is no longer suffering. You may feel sad, angry or guilty. You may also feel panicked by what lies ahead. It’s important, especially in the first few days following a death that you allow:  time to take in what has happened  time to talk about the person who has died  time to feel the pain and loneliness  time for yourself.

The Moment I Fell Open to Grief

"Falling open didn't change my level of pain, but it did change my level of participation in my grief. Instead of an escape-seeking victim I became a sober human being exploring the cavern of my heart with a magnifying glass called grief. You see, the only way I would find my way out of this land of loss was by finding my way in. My own way in. Not your way in or the five expected ways in, but my own unique, heart-breaking, heart-quaking, heart-opening way in. This falling open to grief doesn't change grief. It just changes how it lives in me. I allow the missing to be a form of gratitude; the memories to be shared instead of shamed; and the anniversaries to be commemorations instead of condemnations."

The Moment I Fell Open to Grief

Wednesday, February 17, 2016

Interview: Odell Glenn, Jr. on His Book, Caregiving -- The Inspirational Manual

Odell Glenn Jr.'s new book, Caregiving – the Inspirational Manual: 200 Caregiver Tips with Healthy Lifestyle Benefits, isn’t written by a medical professional or caregiving practitioner, but a maverick “everyman” who had to learn the hard way when he assumed the role of primary caregiver to his parents. In his new guide, Glenn helps caregivers and those soon-to-be caregivers understand exactly what their role is, how to care with true love and compassion and also keep themselves healthy in the process. It comes at a time when millions of Americans each year find themselves taking on a “job” they didn’t expect in taking care of disabled and terminally ill family members. For more information, see Glenn's caregiving website.

I am deeply grateful to Mr. Glenn for taking time to answer my questions.

What should families with adult children do before the parents become infirm or ill to prepare for the possibility of having to become a caregiver?

Families need to have annual meetings with adult children early on. Discussion of future plans in an event that someone becomes terminally ill is vital. So that it doesn’t become a total shock on who does what, these discussions should be made clear. Nothing should ever be assumed when it comes to life circumstances such as these. Knowledge about what a DD214 form is, what the power of attorney represents, health power of attorney and how different it is from a regular power of attorney, representative payee, medical laws, Medicare and Medicaid should be studied and researched as a family long before retirement. Funeral arrangements should be discussed with adult children. Who, what, where and how questions should be answered. This takes the stress off of the children. Life support questions, nursing home, adult day care centers or stay-at-home preferences should be clearly specified. A will should be in place as well. Without these things in place it gives added stress to the caregiver.

How did you first get interested in this issue?

There are currently 34.2 million adults in U.S. who have been a caregiver to an adult aged 50 or older in the last 12 months. That means close to 15% of all American adults are caregivers! This is just the tip of the iceberg as projections for future caregivers has gone sky high – it is estimated that there are 5.1 million U.S. family members with Alzheimer’s disease in 2015 and this will climb rapidly to 6.8 million by 2025. This is the ultimate reason why I wrote this book. It is to inform the many caregivers that find themselves daily in this dilemma. It was a sudden deep-end dive into new beginnings, unexpected struggle and a new rhythm on life that was unlike anything I had experienced before. After 9 years and still counting, I learned the hard way but am now able to release a wealth of information as an uplift to current and up and coming fellow caregivers as they assume a new chapter in their lives. They are not alone and the book can be used as a guiding hand and a beacon of solace.

How can caregivers protect themselves from getting burned out?

You often hear of caregivers as destroying their own health in the process and in some cases, left unable to care for others any longer. There is a fine line to draw between dedicating your time to your loved ones while also enjoying your own life and freedom in the process.

I suggest caregivers join a support group. In the event that your loved one has dementia or Alzheimer’s disease, just to know that others are going through the same kind of dilemma that you are going through helps you in so many ways. Also, seek a professional counselor. Alzheimer’s is a cruel disease with no cure. With all that you do, you cannot cure the disease and it continually gets worse. You may need to see someone to allow you to vent and let your frustrations out. It’s okay. You are only human.

I also suggest getting away for a day or two. Allow others to care or hire someone to sit for you. Read a book, go see a movie, jog, ride a bike, jog, go to the gym or have lunch with a friend. You will need these outlets to survive the wilderness experience. Writing and keeping a journal for me was meditative. My work away from home as a PhD candidate and a minister in and among other also keep me grounded in the world around me. I am grateful that I had an advisor at the university as well preachers who were sensitive to my work at home and allowed my schedule to be flexible in terms of hours. There are days when I do not go to bed because of this but somehow God gives me energy and grace to get things done with excellence. Isaiah 40:29 comes in handy “He giveth power to the faint; and to them that have no might he increaseth strength.” Some days seemed longer than others but prayer has been the key element that has taken me through the wilderness, up and around the mountains and through the valley. Keep life balanced through fulfilling your purpose. Embrace caregiving as a part of your life’s purpose and treat it as a job ingrained into the core of your being.

What kind of community and government resources are available to help caregivers?

If your loved one has served in the armed services, there may be help available. Make sure you know where and what the DDT214 form is and when and where you need to show it. The Alzheimer’s Association has funds available each year set aside for caregivers to use as respite. In the state that you live in, there are also state agencies that you need to contact to use state funds for caregivers. These funds help you to be able to get respite so that you will not burn yourself out. They are certainly not a lot of money and time but the very little that they do give helps you tremendously. Respite services can be quite expensive and so use these services when you need them. This is especially helpful when you have more than 1 person you are caring for with vastly different needs.

Senior citizen agencies are a really big help. They are in each community or within surrounding communities. This allowed me to work outside of the home while I had one in adult day care and the other in a local senior citizen community during the day. Church is another community service that is available. My church has noon day prayer and scripture reading on Wednesday and my Mom gets picked up. She gets weekly calls and visits from some of the members. There are also senior citizen luncheons and outings. These outlets help me tremendously!! My loved ones are around people that I trust and the programs are conducive to growth, learning and entertainment for them. In addition, in my community is an Interfaith Community Center wherein my mom volunteers in passing out food and clothing through a thrift shop. It is a Christian environment and an outlet for her. It gives me peace of mind that the surrounding community offers these programs. I suggest caregivers check around the community and in your local church to see where you can get help.

What do you want caregivers to learn from this book?

I want caregivers to realize that they have a voice. This book represents the voice crying out in the wilderness for caregivers, especially for those who are just beginning their journey. Psalms 82:3 says “Defend the poor and fatherless: do justice to the afflicted and needy.” As you selfishly care for your loved ones, I want caregivers to know that they can still have a wholesome life. My life is reflective of it. Through this journey, I was still able to complete a doctoral dissertation in chemical engineering (one of the toughest fields to get through), as well as carry out ministerial duties and voluntarily work for a non-for-profit foundation in my community while caregiving. The journey still isn’t easy but I managed to get it done through God’s grace. I now want to become a worldwide traveler. I am planning a trip to Italy!! How can I go? I don’t know but faith will take me there!

How is caring for a family member with dementia or memory problems different from caring for people with cancer or physical limitations?

Dementia and Alzheimer’s are degrading diseases and is not the normal process of aging. It is currently the sixth leading cause of death in terms of illness and disease. The person over times becomes worse and less cognizant. Unlike cancer or physical limitations, there is presently no known cure or cause as to why and how to prevent this disease. It can wear a caregiver out. You are constantly planning the schedule each day for the person. If you have more than one person that you care for, you have three very unique, different schedules to plan and prepare. Answering the telephone, bathing, dressing, eating can become a major problem in a home. Cleaning a home with hardwood floors or carpet can become a burden because of the damage the person can bring inside a home. The person with these symptoms may or may not recognize you. They become childlike and there is nothing you can do about it. Current medications are given to slow the process however there comes a point where these medications are of no effect. You do as much as you can to help them retain memory, but there comes a point where you have literally done all you humanly know how to do.

Pray, walk, march, run, protest and March in your local community to have research dollars spent on finding a cure to this disease! Partner with the Alzheimer’s association and other organization that advocate your concerns. Vote for the person in office that wants to invest in finding cures.

What legal documents do caregivers need to be sure to have?

As mentioned earlier, the DD214, health power of attorney, representative payee, power of attorney, will, funeral arrangements, birth certificates, passports, identification cards, Medicare and Medicaid information and a list of all doctors, nurses and physicians should be in your possession and kept in a safe place.

What kind of help does hospice provide?

When you have done your ultimate best to keep your loved one in the home and have discussed next steps with your loved one physicians, an extended care facility or nursing home would be the next step. These services give the patient 24/7 care. Nurses and doctors are on staff every day and every hour. There are also entertainment opportunities for them. They are provided three meals a day with haircuts and personal care. You find that as the person’s condition worsens this service will be extremely beneficial to you. We pray it doesn’t get worse, but if it does, this service is then available. There is nothing you can do about it but leave it in God’s hands. His hands are bigger than yours alone.

If you could make one change in the way families care for members who are ill, what would it be?

Everyone grieves in different ways. Some are more expressive and some keep their feelings private and internal. It’s okay to grieve because of the pain that you see your loved in. Families need to recognize the grief in each other and then help by sharing. In my case, I have a sister who relieves me each month with my mother, even though she and her family lives in an entirely different state. That only gives me strength to continue to fight the good fight of faith. It is a sacrifice however that’s a price you pay for care. I have a brother that comes and helps around the home. Another sacrifice that helps relieve the responsibility. All families need to be aware that with these types of diseases there will come challenges, but they can overcome them by working alongside each other.

Do families sometimes become closer when one member is caring for another?

I cannot speak for all families throughout the world. But they all should become closer. Caring through sickness is an example of how fragile life can become. I am reminded of the scripture in 1 Corinthians 13:13 “And now abideth faith, hope, charity, these three; but the greatest of these is charity.”

Griefwalker: Touching Film about Stephen Jenkinson and EOL

Griefwalker by Tim Wilson, National Film Board of Canada

This documentary introduces us to Stephen Jenkinson, once the leader of a palliative care counseling team at Toronto's Mount Sinai Hospital. Through his daytime job, he has been at the deathbed of well over 1,000 people. What he sees over and over, he says, is "a wretched anxiety and an existential terror" even when there is no pain. Indicting the practice of palliative care itself, he has made it his life's mission to change the way we die - to turn the act of dying from denial and resistance into an essential part of life.

Monday, February 15, 2016

Art Helps Medical Professionals Connect to Patients

In Palliative Care, Comfort Is the Top Priority - The New York Times

"Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment. Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences. It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression. They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer. "

In Palliative Care, Comfort Is the Top Priority - The New York Times

The Gift of Bearing Witness to Grief

"When I stood up behind the wooden podium next to the big floral wreath to share about my dad, I looked out and saw not only my husband and mother and sisters, I saw my community. There was nothing left for them to say or do. Just be with. And that is one of the greatest gifts we can give someone on the often-lonely journey of grief. We can give the gift of bearing witness to the pain. Not coming with neat answers wrapped in tidy Christian clich├ęs. Just come. Show up so a friend is not alone in the question-asking, faith-wrestling, soul-wrecking agony of losing a loved one. It will probably feel awkward. My friends who came in their black blazers and dark navy dresses didn’t know what to say. Frankly neither did I. But I was deeply thankful for them just being there. Their presence alone spoke volumes. It told me my dad’s life mattered. My loss and grief mattered. I felt lost, but I was seen."

The Gift of Bearing Witness to Grief

Friday, February 12, 2016

The Life of Death

The Life of Death from Marsha Onderstijn on Vimeo.

The Life of Death is a touching hand-drawn animation about the day Death fell in love with Life.

How to Have Everyday Conversations About Death and Dying

Very good suggestions in this piece, which pretty much boil down to: don't be afraid to talk about death.

"Even though there has been increasing media attention to end-of-life issues over the past year, we still live in a death-phobic, death-avoidant culture. While our movie and videogame screens are filled with images of violent death and news reports remind us every day of various threats to life, there is still a scarcity of authentic conversation about death in our society. Increased awareness and acceptance that death is a natural part of life is one of the most-needed changes in our communities. When we are able to face death without shutting out the conversation or turning away our attention, we will be less likely to resort to futile medical treatments to support our illusion of immortality and more likely to live our days to the fullest, because we will recognize that they won't last forever. In order to reach a point in our society where death becomes a "household word" we must begin to have normal, ordinary conversations about all things related to death and dying. But this is a difficult task for most of us because we've never been taught to talk about death."

How to Have Everyday Conversations About Death and Dying

Death with Dignity

Wednesday, February 10, 2016

Final Fling - Excellent Resource for EOL Planning

Many in Hospice Don't Get Medical Visit in Last 2 Days of Life: Study

In the last two days before dying, many hospice patients cared for at home or in a nursing home were not seen by a doctor, nurse or social worker, a new study finds. The researchers found that one in eight Medicare patients didn't get such visits, especially if they were black, dying on a Sunday or were in a nursing home....Dr. Alexi Wright, an associate professor of medicine at Harvard Medical School in Boston, said that hospices are underfunded.  It's the one area in medicine that is a per-diem service paid for by a fixed daily rate that must cover medications, equipment and clinical caregivers' salaries at a cost that's less than a single dose of chemotherapy, she said. "Families are often overwhelmed when losing a loved one and haunted by their final moments," Wright said. "This is too important a time to shortchange patients and their families. As this study shows, hospice payment reform is long overdue."

Many in Hospice Don't Get Medical Visit in Last 2 Days of Life

Tuesday, February 9, 2016

Five New Books About Dying: Between Denial and Succumbing

These recent weeks have seen the publication of five books about death: one by a historian; two by hospice workers; one by a widow; one by a man who is dying himself. Several of them quote Dylan Thomas’s “Do Not Go Gentle Into That Good Night” to advocate resilience, then map the fine line between denial and succumbing. In “Death’s Summer Coat,” Brandy Schillace complains, “The modern Westerner has lost loss; death as a community event, and mourning as a communal practice, has been steadily killed off.” Examining rituals of bereavement across cultures and across time, she suggests that everyone else has been better at the rites of farewell than we are. Our postindustrial disavowal of mortality is described by Simone de Beauvoir, who wrote, “For every man, his death is an accident and, even if he knows it and consents to it, an unjustifiable violation.” Schillace, a research associate at the Dittrick Museum of Medical History, points toward the confusion that has emerged in a technological age when brain death, heart death and other definitions becloud our understanding of expiry itself, observing that by current legal definitions, the same person could be alive under American law and dead under British law. We don’t know what death means or even what it is.

‘The Good Death,’ ‘When Breath Becomes Air’ and More - The New York Times

Monday, February 8, 2016

Living, Dying and the Problem with Hope | Dr. Leslie Blackhall | TEDxCha...

"Am I Dying Doctor?": How End-Of-Life Care is Portrayed in Television Medical Dramas | Open Access | OMICS International

This is a fascinating academic study of the portrayal of EOL care on television.

"A total of 68 episodes (in total 48 hours) of television medical dramas were reviewed. We viewed 22 episodes of ER (15 hours), 22 episodes of House (16 hours), and 24 episodes of Grey’s Anatomy (17 hours). End-of-life communication We observed 99 events of end-of-life communication between a healthcare professional and patient or loved one (27.3% in ER, 41.4% in Grey’s Anatomy and 31.3% in House) shown in Table 1. Most patients were male adults. In 45.5% of the events a physician initiated a discussion about end-of-life care. The words “death” and “dying” were used in 16.2% and 47.5% of the events, respectively. Chi square tests revealed no significant differences in the use of the words “death” and “dying” between patients, loved ones and healthcare professionals (p>0.05). Other words used when talking about end-of-life care were for example “fatal”, “the heart will stop”, and “nothing we can do”. The most frequently addressed topics were: talking about the possibility of dying, treatment options, and life-sustaining treatments. Patients’ feelings about getting sicker were not discussed at all. In 12.1 % other topics were discussed such as talking about sedation, talking about the fact that the patient has already died, talking about the death of a loved one, talking about a death wish or preferred place of death. Death During the 68 episodes, 27 patients died (59.3% in ER, 33.3% in Grey’s Anatomy and 7.4% in House) Table 3. In general, death was unexpected and patients were surrounded by a physician, loved one and/or nurse. Life-sustaining treatments were shown for 81.5% of the patients who eventually died and mechanical ventilation was discontinued in a minority before death. In only 11.1% of the situations in which patients died there was a reference to an advance directive. Discussion Key findings The present study shows that in television medical dramas healthcare professionals and patients or loved ones talked regularly about end-of-life care. Also CPR and death were frequently portrayed. Discussions about end-of-life care in television medical dramas were mostly initiated by physicians in the presence of patients and loved ones. The most frequently addressed topics were: talking about the possibility of dying, treatment options, and life-sustaining treatments. The immediate success rate of CPR was 51.1%. Death was often unexpected. Usually, a life-prolonging treatment was performed before death. Finally, advance directives were uncommon. "

"Am I Dying Doctor?": How End-Of-Life Care is Portrayed in Television Medical Dramas | Open Access | OMICS International:

What's your grief? The Pain of "Secondary Losses"

I always remember my cousin talking about the weeks following her mother's death: "Just when you are devastated and have every right to expect that the world will give you a break on everything but mourning, you have to deal with so much stuff."

"When we experience a death the grief associated with the loss itself is excruciating.  There are the obvious things we “expect” (though it is hard to describe anything with grief as expected).  In the immediate, the pain of the loss can be all consuming.  But in the weeks and months that follow there can be a sense that we are losing even more than just that person.  The world turns upside down and suddenly it feels like everything is changing or disappearing. This snowball effect stems from the fact that a death does not just create a single hole in one’s life.  Instead the loss can impact many areas of one’s life, creating multiple losses from that “primary loss”.  Though it is easy to think that our grief is solely the grief of losing the person we cared for so deeply, our grief is also the pain of the other losses that were a result of the death.  You will hear these losses referred to as “secondary losses”, not in the sense that their impact is secondary, but rather that they are a secondary result of the primary loss."

What's your grief?

NHS Trust encourages terminally ill patients to leave final wish list | Daily Mail Online

When we feel least in control, opportunities like this provide great comfort for terminally ill people and their families.

"Terminally ill patients are to be encouraged by an NHS Trust to write their own ‘end-of-life plan’ instructing doctors, nurses and family about their wishes for their final months, days and hours. The document is based on birth plans that pregnant women commonly draw up with their midwives, and takes the form of a single-page grid detailing the personal wishes of the patient about every aspect of their care. Subsections include: ‘What will be important to me...’, ‘How to support me and those I love...’, ‘What MUST happen...’, and ‘What MUST NOT happen...’ when the patient has months, weeks, and then just days to live, at the time of their death, and then afterwards."

NHS Trust encourages terminally ill patients to leave final wish list | Daily Mail Online

Sunday, February 7, 2016

Not Just a Death, a System Failure - The New York Times

"My mother’s brutal death exposes so many flaws in American medicine: our lack of palliative care, our unwillingness to face end-of-life decisions, our inability to stop the procedures and just let go. Her death was a system failure, and as a doctor I don’t know how I alone can fix the system. I know only that I will try."

Not Just a Death, a System Failure - The New York Times:

End-Of-Life Care For Cancer Patients Can Help Bring More Value To Life

Death is an important part of the conversation when it comes to cancer, which is why specialists have become focused on ensuring patients know their options when it comes to palliative care. For Dr. James Downar, a critical care and palliative care staff physician at Toronto General Hospital, he's seen an increased recognition in the value of palliative care, and better adoption of it earlier on in the disease course. "Palliative care is often thought of as speciality of medicine that is only given to people at the very end, and that’s not true anymore," he explains to The Huffington Post Canada. "Our intention is to help with symptoms and decision making, and that's often relevant much earlier than people realize."

End-Of-Life Care For Cancer Patients Can Help Bring More Value To Life

Words of Comfort

A friend writes words that comforted her: "May his spirit safely depart to join the spirit that unites us all."

How to Transform Our Discomfort Around Death and Loss - Sonima

 "Death unavoidably touches and changes us. Although we often deem death a negative force, the transformation it instigates can be positive. Caitlin Doughty, a mortician and death acceptance advocate, says, “Death is the engine that keeps us running, giving us the motivation to achieve, learn, love, and create.” Whether it motivates us to live more fully or calls us to examine our beliefs, death—our own or that of those we love—will affect us. Exactly how death and loss affects us is determined by our perspective and how we engage with the process. Because fear of death and dying is common in contemporary Western culture, many of us do not hold an accepting attitude towards, nor do we actively participate in, the process. And yet, death is a primary source of what nourishes life. By engaging in a loved one’s dying process and staying present in the aftermath of their death, we can explore and ferment our values, evaluate and prioritize other relationships, and examine how we care for others and ourselves. And by intentionally cultivating a relationship with our own death—regardless of our age or degree of health—we might just be able to dispel our fears, sidestep unnecessary suffering, and enhance our quality of life."

How to Transform Our Discomfort Around Death and Loss - Sonima

Saturday, February 6, 2016

What shall I do with the sympathy cards people sent when my baby died? | Life and style | The Guardian

 For all my gripes with condolence cards and what to do with them, I, too, have sent them since Ellora died. I make it a point never to write sorry. I’d hope the sheer act of sending the card would do that job. And I only write what once gave me strength: “I send you prayers and wish you fortitude.”

What shall I do with the sympathy cards people sent when my baby died? | Life and style | The Guardian

Friday, February 5, 2016

Moderately Good Drama, Definitely Bad EOL Medicine in "Creed" and "The Choice"

Two recent movies highlight the gulf between the dramatic/romantic myths our culture holds onto about end of life issues. [SPOILER ALERTS] In "Creed," the seventh film about Rocky Balboa (Sylvester Stallone), Rocky gets cancer. Initially, he says he does not want treatment. He has done everything he wanted to do, no one is depending on him, and he does not want to go through the miseries he saw his late wife experience. It would be great to see this kind of decision portrayed as rational and legitimate, but in the world of this movie it exists for dramatic purposes, so that Rocky can have another fight -- the fight against cancer.

And in the new Nicholas Sparks movie, "The Choice," a young wife and mother is on life support following a car accident. After months go by without any improvement, all of the medical specialists advise her husband that there is no hope and he should let her die. But he insists on keeping her on life support until magically she wakes up, like Sleeping Beauty, as though nothing had happened. This romantic myth, that true love can bring back someone the doctors say is gone, makes for a great happy ending but what we need is more movies that tell the real story of how families can do a better job of caring for terminally ill people.

3 things to offer the dying - the soul midwives way - Final Fling

 "I made a wish list for sitting with the dying: Treat each person as if they are the most important person in the world Offer as much love, time , understanding and kindness as possible Use gentle techniques – touch, music, deep listening and meditation – to soothe pain and fear. “These skills became the essence of Soul Midwifery… a blend of old and modern ideas. “Soul Midwives are non medical, holistic and spiritual companions to the dying and their loved ones."

3 things to offer the dying - the soul midwives way - Final Fling

Thursday, February 4, 2016

Telling the Truth to Someone Who is Dying

Anticipatory Grief - Explanation of Anticipatory Grief

"Anticipatory grief also provides an opportunity to say five important things: Will you please forgive me? I forgive you. Thank you. I love you. Goodbye Having the chance to bring the relationship full circle can bring a sense of closure and make the grieving process after death easier."

Anticipatory Grief - Explanation of Anticipatory Grief

Signs the Dying Process Has Begun

 "As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body. There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler."

Signs the Dying Process Has Begun

Kaddish Meditation in Memory of a Victim of Suicide -- Jewish Ritual

"Sovereign of Compassion, I am about to recite Kaddish, to praise Your great and exalted Name, on behalf of my dear loved one ____________, who has gone to their eternal home as a victim of suicide. I am about to say that You are above all expressions of comfort, yet comfort feels fleeting. I am about to call You the Maker of Peace, yet I have struggled to find any peace at all. My mouth, so often silent in shame, fills with unanswerable questions. My mind, so often overcome with guilt and regret, fills also with memories of their love, of their kindness. My heart, so often rent with pain, strains to reach toward You, toward them, toward the community which surrounds me, aware or unaware of my grief. The memory of my dear __________ is far greater than the way they died. May I honor that memory through acts of charity, acts of loving-kindness, acts inspired by hope.  May my giving voice to their silence help me to find healing in my mourning.  May their spirit be bound up in the bonds of eternal life. Amen."

Kaddish Meditation in Memory of a Victim of Suicide -- Jewish Ritual:

Wednesday, February 3, 2016

Dementia loved ones 'benefit from visits' - BBC News

"A survey found that 42% of the public think there is no point in keeping up contact at this stage.
But the Alzheimer's Society said family visits stimulated feelings of happiness, comfort and security.
Even as the condition progresses, it said people with dementia can still hold an "emotional memory".
This means they continue to feel happy long after a visit or experience that they may have forgotten."

Dementia loved ones 'benefit from visits' - BBC News

Tuesday, February 2, 2016

The Inspired Funeral

"Planning for your own death and getting acquainted both with what is traditional and what is newly possible in today’s end-of-life rituals can be a spiritual practice that helps you face your own mortality with courage and in a way that reflects your most deeply-held values. Sadly, people who postpone funeral discussions are too frequently confronted with decisions involving thousands of dollars as they hold tissues in their hands.

Join journalist and NY-licensed funeral director Amy Cunningham as she explains fascinating (uplifting!) new trends in today’s funeral business and offers timely, helpful information on such topics as: how to plan a reasonably-priced, back-to-basics funeral or memorial service; the “green burial” movement and green cemeteries near New York City; new thinking on the burial shroud; cremation’s pros and cons; biodegradable caskets; blended-faith/alternative ceremonies; and much more."

The Inspired Funeral

Monday, February 1, 2016

Rethinking Death (NPR)

Listen to NPR's excellent "Rethinking Death," with TED speakers on topics from last wishes to burial to comforting those who are at the end of life.

Reevely: Father’s death drives Ottawa South MPP’s efforts to improve Ontario’s palliative care | Ottawa Citizen

“We invest a lot — as parents, as a society, as a government — when people come into this world. I think going out deserves the same sort of attention and support,” Fraser says, and he means from everyone.

People’s worlds narrow when they’re dying, he says, but the things they still want, they want very badly. “It’s generally acknowledgments of what’s important to you — often, that’s just that you’re here and it matters,” Fraser says."

Reevely: Father’s death drives Ottawa South MPP’s efforts to improve Ontario’s palliative care | Ottawa Citizen

Review: A Widow Documents Her Loss in ‘The Iceberg’ - The New York Times

"This book is about love and witness. “There is going to be destruction: the obliteration of a person, his intellect, his experience and his agency,” Ms. Coutts writes. “I am to watch it. This is my part.”

She chronicles in close detail the fluctuations of her husband’s illness. She also delivers acute writing about her own physical and mental burdens. “I have never cried like this,” she writes early on. “The fatigue of it is seismic. This is crying as main violence to the self.”

She adds, in words that give this book its title: “The shock feels greater because the tears are my first intimation of scale. I am nearing the iceberg. My tears are sonar. They release on impact a faint understanding of what lies beneath: a vast solid, the floating mass of ice that is still to come.”

Review: A Widow Documents Her Loss in ‘The Iceberg’ - The New York Times

11 most common questions people as ask they're dying

A moving essay from a death doula.

"No matter what someone is asking, the most important thing is that they are heard. That their pain and anguish, their hopes and dreams, their worries and their fears are all given a voice. When a person at the end of their life is talking, the greatest gift we can give them is to listen. Here are the most common questions I'm asked, and how I respond."

She says they want to know what is happening, whether it will hurt, whether there is anything they need to do, and what will happen when they're gone.

11 most common questions people as ask they're dying

Against Grieving in Silence | Rachel Stephenson | TEDxCUNY