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Joseph Nowinski, Ph.D.

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The New Grief: How Modern Medicine Is Changing Dying, Death and Loss

Posted: 8/11/10

The realities of death and dying have changed profoundly in a relatively short period of time. Why? Thank the ongoing and remarkable advances in medical diagnosis and treatment. As a result of these advances, life expectancy in countries like ours continues to grow. Modern medicine, in short, is getting better and better at staving off death. And because of this the nature of grief has changed.

In her book, "Two Weeks of Life: A Memoir of Love, Death, and Politics," Eleanor Clift details her experiences after her husband, Tom, was diagnosed with kidney cancer, fully five years before he died. Tom spent the last 10 weeks of his life at home, in a bed that hospice services had set up for him. The couple had a good idea, at least four months earlier when Tom's oncologist recommended discontinuing chemotherapy, that Tom was finally approaching the end.

Clift's memoir describes what more and more people are facing: the shift in the experience of dealing with dying and death.

For better or worse, this shift is a situation that virtually every one of us will find ourselves in sooner or later. The crisis begins when we learn that a loved one has been diagnosed with an illness that is terminal or life-threatening. But this only marks the beginning of a journey--one that may last months or years, and which has the potential to affect just about every aspect of our lives and our relationships.

In her groundbreaking 1970 book, "On Death and Dying," Elisabeth Kübler-Ross, M.D. identified a process which she believed individuals pass through when they are confronted with death. At the time, sudden and unexpected death was much more common than it is today. The grief associated with that kind of loss is captured powerfully in Joan Didion's memoir, "The Year of Magical Thinking," which recounts her reactions to sudden death of her husband, who collapsed and died of a heart attack in the midst of eating dinner. Didion's initial response to her husband's death typifies what Kübler-Ross called denial. She refused, for example, to read his obituaries. She refused to throw away his clothes. And she avoided going places that would remind her of him.

As useful as the Kübler-Ross model may have been in its time, the realities of death and dying have changed dramatically in the intervening 40 years. If the kind of grief that Kübler-Ross wrote about--and Joan Didion experienced --represents what we could call traditional grief, then it stands in contrast to what could now be called the new grief. This new grief is defined by a very different set of circumstances.

Today, having a loved one live with a terminal diagnosis for an extended period of time is increasingly replacing sudden and unexpected death as the norm. Consider, for example, that two-thirds of those who are diagnosed with cancer currently have a five-year survival rate. Today, a diagnosis of cancer (or coronary artery disease) no longer means that death is imminent. In fact, over 1.4 million cancer survivors are more than 20 years past their initial treatment episode. The same is true for heart disease; the number of deaths immediately following a heart attack has decreased dramatically, and continues to do so.

One profound result of all of this is that death has become less and less a sudden and unexpected event. In its place has come a process that begins with a diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death. This process means that both the terminally ill individual and the family are increasingly confronted with the need to "live with death" for a prolonged period of time.

Regardless of whether it comes suddenly and unexpectedly, or slowly with much advanced notice, the death of a loved one leaves us with a feeling of loss. That is unavoidable, given our human capacity to form attachments. In a sense, our attachments define us. When we lose an attachment, we lose a part of ourselves. And we grieve that loss. That said there is also a case to be made that contemporary grief differs in significant ways from traditional grief, not the least of which is that it includes the terminally ill person. What has increasingly become a protracted process, as opposed to an event, typically draws in the entire family of the dying person for months or even years.

What today's families can use is a "road map" they can turn to as they navigate their way through the current realities of death and dying. That road map will be presented in a forthcoming book, "Saying Goodbye: How Families Can Find Renewal Through Loss." It is also the ongoing subject of this blog.

The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration, as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence about the wisdom of extending life. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are busier than those of earlier generations.

The new grief also involves confronting family issues that may have been dormant--but unresolved--for many years. These issues typically re-emerge as families move past their initial reactions to a terminal diagnosis and are forced to interact and work together more through a process of extended grief. Finally, the new grief means moving forward together, potentially as a stronger and more resilient family, after a loved one passes.

This, then, is the good news: families can find renewal, even in the face of loss.

The goal of this blog is to provide you with an overview of the journey that lies ahead, along with advice as to how you can successfully negotiate your way through the new grief.

 
 
 

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The realities of death and dying have changed profoundly in a relatively short period of time. Why? Thank the ongoing and remarkable advances in medical diagnosis and treatment. As a result of these ...
The realities of death and dying have changed profoundly in a relatively short period of time. Why? Thank the ongoing and remarkable advances in medical diagnosis and treatment. As a result of these ...
 
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03:40 PM on 08/12/2010
Love and death are two beautiful gifts we pass on.
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DrJohnnySkeptic
The road to success is always under construction.
08:26 PM on 08/11/2010
My mom had back pain for three weeks and just found out over a week ago that she has a cancerous mass on her spine. She just went through a week of radiation and my brothers and I have been helping to take care of her for the past week or so. She's not really eating and is in bed all the time. She gets sick at least once a day. Recently, she was hospitaliz­ed for dehydratio­n and had to spend the night in the hospital. My whole family (myself, my brothers and father) are trying to be there for her as much as we can, but it's so hard for us to see her so weak. She is the glue that holds my family together and I can't even imagine her not being with us.

I pray all the time that she's okay and try to think positively­. I'm very spiritual, so I'm trying to send out positive vibes into the universe as my hope that she will recover and stay with us for years to come.

I love you, Mom.
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MexiChick67
Que? Que? Queee?
03:54 AM on 08/13/2010
God speed to her recovery. But, know that if she does pass that she will be with you in your heart and through memories. I lost my dad 20 years ago and this very evening while walking my dog I saw something that reminded me of him. It made me smile and tear up a bit. They never leave your side.
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DrJohnnySkeptic
The road to success is always under construction.
08:26 AM on 08/14/2010
Thank you for your kind words. Unfortunat­ely, we found out two days ago that her kind of cancer has spread from her spine to her lungs and she has cancer in her hip as well. There is no hope of saving her, as she is over 70 years of age. We found out that she has three to six months to live. We're all grieving right now, but we're trying to put our sadness aside to treat her like we always have to make her more comfortabl­e.

She is at peace and accepting her fate with dignity and grace. We're trying to make the remainder of her life full of love and care.
07:34 PM on 08/11/2010
My childhood friend just lost her 37 year old daughter 8/10/10 at 8:00 pm to cancer.The Doctor when ask about a treatment she could get , said the insurance company will not pay for it.Sociali­ze medicine I am ready for it.Dang all those that are against it.
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DrJohnnySkeptic
The road to success is always under construction.
08:28 PM on 08/11/2010
I'm so sorry. It's just horrible that health insurance companies getting their money takes precedence over saving peoples lives.
05:29 PM on 08/11/2010
As a hospice nurse and a person being treated for lymphoma, I am here to say this new grief due to the fact that we are busier than generation­s before us could not be more out of touch with the reality of the death of a loved on. Yes, a family can talk decisions out and get legal issues in order, if necessary, but when the time comes and death has come I have seen no big change in the families that are left with their grieving process.
Yes, people with terminal diseases are living longer due to our many advances in treatments­. From where I sit I can honestly say the personal devastatio­n that occurs at the time of death is still with us. I have held people as they died and prayed with people when they were taking their last breath...n­o matter how much planning that is done takes grief and lessens it.
Of course I will say that making plans before death and bringing in hospice to help explain the process and what to expect is, perhaps, the most best way to help all that are hurting. I do not want others to believe I disagree with all that is said in this article. I do find it a bit cold and heartless.
RNinFlorid­a
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PatrickforO
America needs a Labor Party
03:30 AM on 08/12/2010
Amen. The grief cycle stays the same. It is just prolonged with new medical technology­. But the grief is the same.
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riosgirl
02:53 AM on 08/13/2010
As ready as I thought I was to lose my mom, I wasn't. She had been in ill health for a long time but still had her one of a kind humor and legendary wit. Until that last week with hospice. I had been on the front line of caregiving for nearly two years - for both my parents really as my dad was a stroke victim - and I was exhausted, stressed and scared for all kinds of reasons. I felt like I lost my best friend and the one person in the world who's love for me would never fail. My dad has lived on for four years since my mom passed with progressin­g dementia and Alzheimer'­s. For six years now I've been either caregiving­, supervisin­g caregivers­, meeting with nurses, shuttling to doctors, picking up medication­s, taking care of all my dad's bills and taxes and home repairs. And there were 8 ER trips and hospitiliz­ations too for my dad as he had contracted C-dif after knee surgery. My siblings are mostly MIA and one in particular just pops in every now and then to make life hell it seems. I thought this was the new grief the article was driving towards - families shredded to the marrow due to the stress of long term caregiving­. I still really haven't had a chance to grieve my mom. There's nothing new about this. It's just longer and harder.
02:50 PM on 08/13/2010
Thank you. This article is ridiculous­. Grief is grief.
04:57 PM on 08/11/2010
There is also the high cost of dying, which leads to any number of agonizing decisions.
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Since59
Read, lean, repeat
04:52 PM on 08/11/2010
Perhaps we need to rethink the concept of grief. Our culture views grief as something that is inherently limited in use. We permit the grief process to come out on special occasions (such as the death of a loved one) thus not acknowledg­ing that grief is really part of our day to day existence. If we can learn to accept grief as part of our lives – accept the fact that life deals us difficult and sometimes very painful hands – and experience the range of emotions that grief affords us, we can be better prepared to address the fallout. Imagine if we could openly grieve the loss of a relationsh­ip or the foreclosur­e of a home with the same voracity reserved for the death of a loved one. Imagine if we could get past the cultural disapprova­l of outwards expression­s of grief. Imagine if we could move beyond our own discomfort with the grief process and value its expression just as much as we do laughter. In doing so we can help those we love understand that emotional pain and distress are not something to be ashamed of or to internaliz­e to the point of clinical depression but to be valued as much as other emotions.
12:16 AM on 08/12/2010
That would be wonderful if we could. Unfortunat­ely, we're brought up to hide emotions, admonished not to cry, not to be angry to accept the divine wisdom of our parents without outward question. That sort of upbringing makes us either doubt our own feelings or rebel -- in which case, we can count on a certain amount of withdrawal from our parents.

I so agree with your concept of "allowing" ourselves and each other to experience grief and emotional distress without turning it inwards or judging the expression of it.

Perhaps the best we can do is not perpetuate the lessons we were taught,
04:26 PM on 08/11/2010
Yesterday I heard a friend of mine died suddenly - out of the blue. The shock is immense - the loss hard as he was too young to die. At the same time, my 83 year old father has been "dying" of congestive heart failure for more than a year. After many flights home, I'm finally adjusting to the fact that his death is going to be prolonged, slow and a process. It took a while to wrap my head around this notion, and has provoked much discussion with him and other family members about how he would like to live out these end of days. I recently blogged about a brilliant article that was in the New Yorker by Atul Gawande - if you haven't read it, do so - and write and communicat­e an advanced directive to your loved ones. It will save a lot of heartache later on. http://omh­ublog.blog­spot.com/2­010/08/let­ting-go.ht­ml
Glad to see this blog...we need more discussion about these issues.
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Frances Gerdes
"worried well"
04:01 PM on 08/11/2010
My son died of AIDS in 1996 and it was such a slow process. The whole floor of the hospital was filled with AIDS patients! He could not take any more surgery and his veins had all collapsed. He requested a Morphine Drip and it was given. We were with him at his death and watched him go in a gentle way. A strange thing happened at the time of his death ... a man who had one brown eye and one blue, died with two blue eyes. I turned to my husband and said, "Death has blue eyes."
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cheeseandsnark
Snarky liberal blogger
07:24 AM on 08/12/2010
Thank you for sharing this, Frances. Of course it's sad, but your descriptio­n is beautiful. It's fascinatin­g about his eyes. I do wonder what could have caused that. Best wishes to you.
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AwShucks
Obama-Biden 2012 Let's Do it Again
02:59 PM on 08/11/2010
I think that this series will be helpful and I intend to follow all of it.

However, I believe that sudden death is a relative term.

My mother suffered from Alzheimer'­s Disease for approximat­ely ten years before her death. My father was her primary caregiver, but it was shared by the rest of the family.

When my mother died some would say, that it was not a sudden death, but to her family, it was quite sudden.

Even more sudden was my father's passing one month later.

After sixty years of marriage,t­hey died a month apart.

To this day, I don't know if I've grieved adequately for my mother because I immediatel­y assumed
grieving for my father after a month .

Grieving is hard, confusing, and there are really no rules to follow.

What helps is to have someone else who really understand­s and knows how you feel

We were lucky My siblings and I , all turned to each other for comfort .
02:22 PM on 08/11/2010
My father suddenly died when he was 46. I had just entered college and needed him more than ever. I was devastated­. 20 yrs later my mother slowly "disappear­ed" after battling Cancer for 3 yrs. For me, the cancer was much worse. To watch someone you love slooooowly suffer with agonizing, painful treatments­, constantly battling hope and despair for such a long period of time... remission, re-currenc­e, re-treatme­nt... numerous extended hospital stays. Grieving after an extended illness it felt like I had Post Traumatic Stress Disorder for much time afterward. While sudden death is a horrid shock to one's system- I'd choose it over a long illness. It's like tearing off a band-aid- you can do it in one quick pull or slowly tear back the skin for however long it takes you. I'm all for a patient's/­family's choice for Euthanasia­. It is much more humane than hospice...­.which is basically slowly controlled euthanasia if you've ever been through hospice.
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AwShucks
Obama-Biden 2012 Let's Do it Again
03:04 PM on 08/11/2010
Post Tramatic Stress is exactly how I described what I was experienci­ng after the death of my parents a month apart. Like I had been hit by a one two punch.
01:54 PM on 08/11/2010
Thank you for this insightful article.
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robjh1
"That Job Just Isn't Into You!"
01:30 PM on 08/11/2010
My entire family has cancer. While only one of us is the carrier, we are all affected by it. Nine years no we have been battling this sickness. The only end in sight is death. Death to a woman who when diagnosed was in the process of adopting two children. The adoption went through and we are trying to make their life normal, as best we can. Our journey has been difficult. Some family members not talking to each other, feelings being hurt, old wounds opening but through it all we are a family trying as best we can to cope and keep living. When the end of this saga does come, my hope is that we are still a family and speaking too one another.

death be not proud.
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DrJohnnySkeptic
The road to success is always under construction.
08:30 PM on 08/11/2010
I am so sorry for you and yours. I wish you all strength, love, and hope through your times of trouble.

May God bless you all.
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spawoman
01:04 PM on 08/11/2010
Interestin­g article, but it doesn't address how modern medicine makes decision-m­aking so difficult and challengin­g. My father-in-­law, aged 80, with numerous health issues, can't have an intelligen­t end of life conversati­on with his doctors because they are so busy covering their behinds. We try to sort through the interventi­ons that will help improve his quality of life vs. those that will extend his life, which he does not want. As I write this, his nurse is begging us to send him to the emergency room, which he does not want. My husband is there to make sure that his father's wishes are being respected.

It's hard to even think about grief at this point. We're just trying to do the right thing, one step at a time, to preserve a man's dignity. It's hard sometimes to know the right answers, and we agonize over each decision.
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dojone
nada
01:36 PM on 08/11/2010
Stick to your guns. Family members are now required to fight not only for adequate treatment, but also for the person's right to die at home with dignity if that is his choice. I spent many years working with dying patients and have seen many times that health care profession­als actually increased the suffering of family's by not helping them realize that it was time to quit.
04:29 PM on 08/11/2010
http://omh­ublog.blog­spot.com/2­010/08/let­ting-go.ht­ml this links to a brilliant article by Atul Gawande in the New York - well worth reading...

Going through the same thing with my 83 year old father...w­ho is at home with full time care and has clearly said no more surgery / interventi­on...but it's hard to manage.
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12:22 PM on 08/11/2010
Jaysus I get sick of people with a Ph.D who think they've invented something "new." Grief is as it always has been, whether death is sudden or protracted­.

When someone is diagnosed with a terminal illness, they are not "dying," they are living.

There is no reason why death should be prepared for any differentl­y in those circumstan­ces. Always be prepared for it and then live life to its fullest. All the issues faced by families of the terminally ill are issues faced by families daily, whether anyone is "dying" or not.

There is no such thing as anticipato­ry grief. People often believe they can go through "part" of grief before the actual event. Even if you know it's likely to come much too soon, when it does, you still encounter all the stages of grief, some of them more than once. Grief is healthy, natural and different for each person - sometimes fraught with a sense of danger, guilt, regret and sometimes containing relief that the loved one is out of pain. But still, the grief remains, often for years.

As a long-time emotional support person for people with AIDS, I know something of what I speak. People are living, they are alive, until they aren't, and should be treated as such. They will tell you what they need. Listen, do not assume.
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12:42 PM on 08/11/2010
during the now 4 year journey through my husband's cancer, the best thing I read was "it is not necessary to grieve while they are alive, you can save it for when they're gone"; that is my constant little reminder to keep life as normal as possible for as long as possible
12:19 PM on 08/11/2010
My husband of 33 years passed away on Saturday Aug 7, you are probably wondering why I am on this sight at this time. We had 2 years to deal with his long term illness and it is true that we were able to settle a lot of issues from the past years. Even though you actually do start the grieving process at the time of diagnosis there is still a lot of grieving to go through at the time of death. There is never enough time and it is still a shock and a difficult time to get through. I cry every single day and feel such an incredible loss I can't put it into words.I was at his bedside when he gave up the fight. People are well meaning with their comments but it doesn't help to hear "he is out of pain now". I feel such an incredible pain I can't explain it. It doesn't matter if it is a sudden loss or one after a long term of illness, it still is an awful experience to go through. For those of you going through a possible loss or are suffering from a loss you have experience­d I send you my love and hope that we shall all be healed soon.
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ontariogirl
Power to the People
02:13 PM on 08/11/2010
I am so sorry for your loss. I understand when you say it doesn't help when people comment about how he is out of pain. I lost my only child who had CP and I heard this alot as well. It doesn't help. The only thing that helps is time. My sister sent me a saying....­."Try to always be kind and gentle with yourself". Please take care of yourself and I send you healing wishes.
02:33 PM on 08/11/2010
My dear friend. I hope you return to this site to read this. I also lost my husband (and best friend) and as I read your post, I related over again all the feelings you are having right now. Please let people care for you and express their feelings of love and sorrow. It does help. Allow yourself time to grieve. Cry when you want to - tears are a gift. I would like to be able to take away the pain you are feeling, but no one can. You must walk this journey for yourself but believe me, when it is over, one day, you will be happy again. There are many people to help, you need only to ask.
07:53 PM on 08/11/2010
to ontariogir­l and cworthy1: Thank you so very much for your words of encouragem­ent. I do know that in time the pain of loss will ease and I will go on,, but right now it just seems impossible­. I have very loving children and are there 100% and we try to keep each other up. I have been eating as much as I can and am trying to get rest, but it sometimes doesn't seem as if I can ever sleep again. Again thank you and God Bless.