Completely Scary Topic: How Do We Die?

Longtermsurvivor

Not specifically about dying, but about living a new life with MBC. Here's a beautiful blog post by someone who's doing it:

I am sorry I didn't beat cancer

July 3, 2016

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn't beat cancer.

Every one said, "You are going to beat it", some said, "If anyone can, you can!!". They cheered me on as I endured one treatment after another and I kept fighting "like a girl". I was told I will kick cancer's ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, "beating cancer". Being very much a type A personality, I accepted the challenge, I said to myself "I will beat cancer". Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would "knock the shit out of cancer". I was no longer the example of how stage 3 can be a success story and inspiration. As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

continued at:

https://uzmay.wordpress.com/2016/07/03/i-am-sorry-...

Longtermsurvivor

Wonderful new article from Britain. Quotes and link follow.

How do people die from cancer? You asked Google – here's the answer

Ranjana Srivastava

Every day millions of internet users ask Google life's most difficult questions, big and small. Our writers answer some of the commonest queries

Wednesday 17 August 2016

Our consultation is nearly finished when my patient leans forward, and says, "So, doctor, in all this time, no one has explained this. Exactly how will I die?" He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.

…

If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. "How do people die from cancer?" is one of the most common questions asked of Google. Yet, it's surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.

Continued at:

https://www.theguardian.com/commentisfree/2016/aug/17/how-do-people-die-from-cancer-google

Please be aware that in Britain, Canada and Australia, palliative care = hospice care. Not so in the USA where they are two separate but overlapping specialties.

Longtermsurvivor

For those who prefer longer, detailed explanations from textbooks and medical journals, I've written a self-help document with links that describes some of the medical events at end-of-life when one is dying of cancer.

Please PM me, if you'd like a copy.

My internet is up and down these days, so please be patient, if I'm slow to reply.

Scary topic, but not unfathomable.

Holding your hand, Stephanie

barbe1958

I took the liberty of copying some of the pertinent info on that link you posted LongTerm for those who can't activate links:

"Failure to thrive" is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body's usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they're normally organs of great reserve so when they fail, death is imminent.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it's important to understand that the lungs (or other organs) don't stop working altogether, but performing under great stress exhausts them. It's like constantly pushing uphill against a heavy weight.

Cancer patients can also die from uncontrolled infection that overwhelms the body's usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.

You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.

In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.

Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.

You may have heard of the so-called "double effect" of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don't shorten an already limited life.

Longtermsurvivor

Very dear article in NYT opinion section:

Talking to Children When a Parent Is Dying

By ERSILIA M. DEFILIPPIS, M.D.

AUGUST 18, 2016 11:07 AM

http://well.blogs.nytimes.com/2016/08/18/talking-t...

pwilmarth

I always find your posts fascinating, and a good discussion for people who are unfamiliar with what dying looks like. I've spent the bulk of my career working with life and death - both at the beginning of life and the end. I know what it looks like, which for a good portion of adults who were not raised in third-world countries is very unfamiliar.

But the question behind the question is: What does death feel like? Will I be in pain? Will I suffer?

With good end-of-life care, you don't have to.

Personally, on my own journey, I'm not close enough to think about what dying means on a personal level. But I'm fully aware that it is inevitable, and it will be peaceful.

Longtermsurvivor

Another perspective

Maybe We Don't Need To Fear Death At All

Rebecca Sambursky

July 15, 2016

Longtermsurvivor

Yet another perspective on scary, yet unavoidable (at some point topic:

Designer Thinks About Death Every Hour: Why Do We Dwell on Dying?

By Ashley P. Taylor

September 8, 2016

excerpt:

Fashion-designer-turned-director Tom Ford said he thinks a lot about death. "Death is all I think about. There is not a day or really an hour that goes by that I don't think about death," he recently told Hollywood Reporter.

Many people probably share Ford's morbid tendencies, at least to some extent, Pelin Kesebir, an assistant scientist and psychologist at the Center for Healthy Minds at the University of Wisconsin-Madison, told Live Science.

"To be preoccupied with death is very common and very natural," Kesebir said. This preoccupation can cause psychological problems, but it doesn't always do so, she said.

It's rare that people have a pathological fear of death, she said. Further, although "thoughts of death can be a source of anxiety and dread for someone," they can instead be "a source of immense clarity and wisdom for others," she said.

However, psychologists in one school of thought — those who are "existentially oriented," or who study the way that concerns about the meaning and value of existence affect human behavior— say that the roots of many common psychological problems can be traced back to people's anxiety about death, Kesebir said. More specifically, these problems relate to anxiety about failing to live a good life, Kesebir said.

"People are usually not afraid of death per se, but of not having lived a worthwhile life," she said.

People may have frequent thoughts about death because of humans' sophisticated mental abilities, she said. Our minds "make us painfully aware of inevitable mortality, and this awareness clashes with our biologically wired desire for life," she said.

The result of this clash is a very understandable and normal anxiety, Kesebir said.

Continued at:

http://www.livescience.com/56013-why-we-think-about-death-and-dying.html

Lunalin

I wonder about this too, a lot. I don't want to read ahead, don't want to be coached. I think I will do it my way and right for me.

barbe1958

I have a pacemaker and wonder how my heart will stop without it making it keep an even rhythm.

Longtermsurvivor

Hi Barbe,

It's possible to turn off a pacemaker while you're still alive and it's not considered euthanasia or physician-assisted suicide.

This book, Knocking on Heaven's Door: The Path to a Better Way of Death, goes into some detail on why doctors say it can't be done, but the actual truth is...

https://www.amazon.com/Knocking-Heavens-Door-Bette...

Below are some more resources I shared with my friend before her mom died from an accumulation of factors.

Don't know if or how the laws differ in Canada.

warm regards, Stephanie

HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy

http://www.heartrhythmcharity.org.uk/app/webroot/files/file/medical-papers/Statement%20CIEDs2010.pdf

Ethical and legal principles and precedents

• ● A patient with decision-making capacity has the legal right to refuse or request the withdrawal of any medical treatment or intervention, regardless of whether s/he is terminally ill, and regardless of whether the treatment prolongs life and its withdrawal results in death.
• ● When a patient lacks capacity, his/her legally-defined surrogate decision-maker has the same right to refuse or request the withdrawal of treatment as the patient would have if the patient had decision-making capacity.
• ● The law presumes that all adults are competent, defined as the ability to understand the nature and consequences of one's decisions. Only a court can declare an adult patient incompetent. In most situations, however, clinicians can assess patients' decision-making capacity and act on these assessments without involvement of the courts.● Ethically and legally, there are no differences between refusing CIED therapy and requesting withdrawal of CIED therapy.● Advance directives should be encouraged for all patients with CIEDs.● Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.● Ethically, CIED deactivation is neither physician-assisted suicide nor euthanasia. When carrying out a patient's request for withdrawal of a life-sustaining treat- ment that a patient perceives as unwanted (including CIED therapies), the clinician's intent is to discontinue the unwanted treatment and allow the patient to die naturally of the underlying disease - not to terminate the patient's life.● The right to refuse or request the withdrawal of a treat- ment is a personal right of the patient and does not depend on the characteristics of the particular treatment involved (i.e., CIEDs). Therefore, no treatment, including CIED therapies, has unique ethical or legal status.● A clinician cannot be compelled to carry out an ethically-and legally-permissible procedure (i.e., CIED deactivation) that s/he personally views in conflict with his/her personal values. In these circumstances, the clinician cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.

see too

HRS: Cardiac Device Deactivation Not Euthanasia, Society Says

http://www.medpagetoday.com/meetingcoverage/hrs/20119

ICD and Pacemaker deactivation: It is neither physician-assisted suicide nor euthanasia

http://www.drjohnm.org/2014/01/icd-and-pacemaker-deactivation-it-is-neither-physician-assisted-suicide-nor-euthanasia/

A Decision Deferred: Turning Off the Pacemaker

http://newoldage.blogs.nytimes.com/2014/01/29/a-decision-deferred-turning-off-the-pacemaker/

Here's the the slow medicine Facebook group that's moderated by Katy Butler of Knocking on Heaven's Door https://www.facebook.com/Updates-in-Slow-Medicine-1485271971725627/

barbe1958

Thanks!!! I'd asked my cardiologist about this year's ago and he crumpled up some paper and said you can't bring back to life a lifeless object. Certainly didn't answer my question about that object having life first!!!

Brendatrue

Hi, Barbe,

Several years ago I participated in a seminar conducted by a cardiologist who serves as a medical team member of a large hospice organization and provides consultation to the National Hospice and Palliative Care Organization (NHPCO). Quite simply, he made a strong argument for deactivating implantable cardioverter defibrillators (ICDs) for those who choose to pursue comfort care via hospice at end of life, but he also maintained that the continuation of pacemakers often served as a comfort measure to those at end of life, adding that some hospice programs were acting too hastily by claiming that pacemakers "must" be deactivated as well to fit the mission of "no life prolonging measures."

His position particularly struck home with me when my father was admitted to hospice care, and no one--his cardiologist, the hospice medical director, his primary hospice RN, his PCP--discussed the option of deactivating his ICD until I insisted that the discussion should happen. Sounds almost incredible, but true. In addition, another family member, who had suffered with heart disease for many years and who wished to have a peaceful and pain free death, felt wonderfully supported when her hospice team assured her that her pacemaker could remain activated to promote her comfort at end of life.

Guidelines are incredibly important, and I for one appreciate knowing as much about various organizational and careguidelines as possible in the process of planning for end of life care. However, what is also so very important is continuing to have conversations about our values, beliefs, goals, and ways in which we make meaning when we talk to our loved ones and our range of care providers as we work to shape our own end of life. In essence, our own guidelines for living and dying are critically important!

Brendatrue

I've had quite a few people let me know how much they enjoyed a story, "What It Feels Like to Die," from The Atlantic, which I posted elsewhere. The story shares how science is just starting to understand the experience of dying. It is by no means definitive, but it is intriguing. Also of interest to me is how media report on dying and death and how this has shifted over the years. I read lots of professional journal articles on the topic of death/dying, but many people don't. The Atlantic article, then, is intriguing for several reasons.

http://www.theatlantic.com/health/archive/2016/09/...

barbe1958

Thanks Brenda. I'm torn as I don't want chest pain while dying and yet if I leave it on will it keep reviving me as my heart wants to stop

Brendatrue

Barbe, your heart can stop beating even if the pacemaker is still sending signals to keep the rhythm regular. If your heart tires and loses its power the pacemaker does not have the capacity for restarting your heart. So, your heart will fail when it's time for your heart to fail, and until then your pacemaker will help to keep its rhythm steady. This is why the pacemaker is not typically considered a life prolonging measure but is considered a comfort measure. Hope this info helps

Heidihill

Barbe, if you plan on being cremated, the device will have to be removed to avoid explosions during the cremation. I think they do the removal in the crematorium, but not sure. We were asked if my father had a pacemaker but he had none.

Lunalin

I'm so sorry. I hope to die with no fuss, no se, under hospice care. No, no, no hospital!!! Just overdose me, please! No horrible scene for the family.

PattyPeppermint

lunalun. Well said I totally agree.

Kattysmith

Thanks, these are great suggestions, and I don't think it's morbid at all. It's a gift to our survivors. I'm stable right now, but we all know that can change on a dime. I've made a few preparations, but need to keep moving forward and get everything in place. I know it upsets my husband when I bring it up, but it will be for the best on down the line. I'm positive, but also very pragmatic.

Longtermsurvivor

Six Steps to Prepare for End-of-Life Care

By Ellen Rand | October 17, 2016

Ellen Rand shares the lessons she's learned about preparing for the death of a loved one.

As a hospice volunteer, I once asked a woman I'd been visiting for several months what she wanted for her upcoming 75th birthday. She was wheelchair-bound, living in a nursing home, and in the last stages of metastatic breast cancer.

"Life," was her answer.

Life. Of course. We all want to live as well and as long as we can. Eventually, though, our bodies betray us and we begin to show the telltale signs of aging. And, as we age, we have to reconsider and accept who we are now, and think seriously about how we want to live throughout our last chapters.

No one wants to think about the prospect of death. But as we lurch into old age, we are faced with the prospect that many of us will need what our medical system does not currently provide: high-quality end-of-life care. It's more than a personal concern; it's a pressing societal issue. Projections are that, by 2030, one-fifth of the population will be 65 and older, compared to 13 percent in 2015, and 9 million people will be over 85.

Currently, our country's end-of-life care is fragmented, costly, and unsustainable. Too much aggressive care is given that is futile and ruinous to people's quality of life. Doctors frequently don't discuss with patients and family what truly matters to them and offer comfort; and those left behind are often wracked by a sense of guilt, haunted by the choices they've made in the heat of the moment without really knowing their loved one's wishes.

Fortunately, there are people, places, and organizations that are taking a serious look at how to improve quality care, and some are making strides in the right direction.

continued at link in title

blainejennifer

Every one here has offered so much good information.Thank you.

Here's the next thought I have been mulling; would you rather have in-home hospice or go to a hospice center? While I think in-home would be easier on my family because we'd be around each other the most, my family isn't good at nursing. At all. So, I imagine that certain medical needs I might have, or even cleanliness needs, would be a hardship on them. Would I have better coverage of pain in a hospice center setting? Do the rooms there have cots for family members?

What have y'all seen and experienced and how has it affected your hospice decisions?

Jennifer

barbe1958

I don't want to be treated at home due to body functions like sucking out the throat and excretion clean ups. No thanks. I also want the steady drip of a morphine please not sporadic injections when someone is awake to give them to me

Longtermsurvivor

Hi Jennifer,

As I'm nearly a year into home hospice care, I can reflect back on what I chose and why.

In my region in the SF Bay Area, there are no residential hospices within 50 miles...so that's not an option for me!

Too bad as the SF Zen Hospice Project with the director BJ Miller is close, just not close enough. See too this end-of-life podcast series...http://tns.commonweal.org/event-series/end-of-life...

Because so many local friends and family members have died while I've been outliving my prognosis, I've been able to witness the different local hospices in action. Also, I have friends who are volunteers and staff at all of the different hospice organizations.

My favorite non-profit agency created an out-patient palliative care program in 2011 and I became one of their first patients. Now that doctor is my hospice doctor...but he comes every couple of months for reviews, which are usually more philosophical explorations than physical examinations.

My daily hospice nurse visits track my physical changes and engage in conversations about that matters to me - oddly and interestingly, we share many common concerns explorations. The chaplain and social worker also visit 3-4 times a month combined. My team keeps me busy.

For 4 1/2 years, I've had a Circle of Care that uses LotsaHelpingHands for organizing calendar, people, announcement and information. The group is a fascinating blend of friends and a couple of family members who plan to care for me through the dying process, to prepare my body for an after-death, at-home vigil and create a funeral in my religious tradition. During the 4 1/2 years we've met, I've developed ultimate confidence in this group of mostly women.

The residential hospices I know of have great facilities for guests - sometimes including kitchen access and ability to share a bed or have a recliner bed nearby. Here's one in Australia I admire https://www.karuna.org.au and there's the Zen Hospice Project above.

Each of us must choose our own way to go based on our understanding and what resources are available. It's never to early to start looking and talking with loved ones about what we want.

Okay, gotta go back to sleep now that my body has calmed down!

Jennifer, thanks for deepening our conversation here!

Sending gratitude and healing regards for all, Stephanie

PS, I hope those of you who believe you are mortal, will check out local hospice alternatives - some places have a lot to offer, some have very little.

PSS, Here's a long & beautiful conversation among cancer folks on choosing a hospice:

Hospice study says hospice patients live longer; discussion on choosing a hospice

Free registration required

PSS, NYC has a zen project too, but I think they closed their residence??? http://zencare.org/home-2/ I've just finished reading their book, a collection of poetry, prose, essays and instructions, Awake at the Bedside: Contemplative Teachings on Palliative and End of Life Care

Mominator

Jennifer, maybe another way of looking at your question would be to look at what choices are available to you? Without knowing your exact town, I was able to find HPCANY - Hospice and Palliative Care Association New York (check out www.hpcanys.org and www.hpcanys.org/find-care) which seems to service upstate NY. You can then search for your zip code or county. 

Also, I suggest you can ask you MO for recommendations. Ask your MO about your anticipated medical needs and cleanliness needs. Ask about coverage of pain in the home vs a hospice center setting. Your MO should know what's available in your area and what your anticipated needs will be based on your disease progression.

After that, I'd suggest touring a few facilities. You may find facilities you definitely do or don't want to go to them. Ask the hospice providers what would be provided in a facility vs in home. In addition to nurses and aides, many hospice programs also have volunteers who provide added coverage.

I've been involved in hospice three times: for hubby's grandmother, and for two close friends. Nana was already in an assisted living facility. Hospice came in and added whatever care the assisted living didn't. Both friends chose hospice at home. Ann had two adult daughters who tended to most of the care. Lori had a husband and a few of us close friends who cared for her, plus hospice services were added in the last two months.

Wishing you all the best, Madelyn

Longtermsurvivor

Personal update from me, Stephanie

xxx

I just wrote this and sent to my belly mets sisters. I want to share my joy with you, because it's so seldom spoken or written about by those at the end-of-life.

xxx

Sending great waves of love, appreciation and healing for all at bco.

Though I'm the sickest of us, am at death's doorstep medically speaking, I feel like I may be among those with the highest quality of life.

A recent turn of events has led to a rebirth of my full self. Have dropped the recent problem finding and problem solving approach to life. Have admitted my mind can't do that now.

Underneath is love, joy, fun, appreciation, gratitude, humor. I feel as though my light has emerged from beneath a bushel basket, to get all biblical on you.

I wish you such feelings while you continue to investigate and pursue aggressive treatment options.

This isn't most folks' path, but I'm having a wonderful time of life.

Of course, I'm healed by my Circle of Care, hospice team, spiritual practices of decades and god working through human acts of love, kindness and caring.

I am so grateful!!!

Loving kindness, Stephanie

Wiegp22

Barb158,

I have a daughter that flew a long way to be with me twice, now she doesn't want to seem to talk about my 4th stage ca, and my son always says he's gong to spend the weekend with but never does, sometimes I wonder if it's all to overwhelming for them and they can only deal with so much, and they seem to not think about what we have to deal with. God bless you 🙏🏽🙏🏽💕💕

Love, paula

Nan812

hi, i just want to keep this post active....im getting so close to my 2 year cancerversary...i just have such a sinking feeling...waiting for the other boot to drop...im so thankful for the time i had, but with my dx i dont think time is something i will have much more of... i really dont want to freak anyone out with my own reality check (first in 2 years) so i will keep these thoughts on this thread for the brave or at least those trying to be brave...these fears are impossible to share with loved ones..it requires to much from me to bring them back up from this devastating reality. thankyou for listening...i wonder how it will start? its so scary to me...

blainejennifer

Nan,

I'm having one of those nights, too. Everyone else is asleep, and it is so nice to think my thoughts without worrying that I'm scaring someone. Kiddo watches my face so hard sometimes.

We are all here for you.

I just decided tonight that I want to do things. Get another dog, tart up the bedroom, finally fix some truly ugly stairs. Most of the time B.C. (before cancer), I would have waited, and not given in to spending money on my needs. Fuggit. I'm not going to wait my turn.

Am I making any sense? It truly is the middle of the night here.

Cyber hugs, Nan.

Freya244117

Hi Nan and Jennifer, I'm another one thinking about this tonight (morning). We had a holiday booked, yesterday my MO told me in no uncertain terms not to go, as I would not survive it. International travel, stage IV (failing liver) and so no travel or medical insurance is not a good combination.

I want to die at home. I just don't want it to go on forever, no lingering death scenes. We have a separate room set up, my husband is happy (probably not the best word) to care for me until the end.

Do we go through a nesting process towards the ends, like when you are expecting a child. I have become obsessed with cooking and freezing meals for DH, sorting out cupboards, getting rid of my craft things etc.

Not sure what else to say at the moment.