Shedding Light On the Cancer Journey: the book

My dear and faithful readers:

As of today, over 57,000 people have read and hopefully benefited from this blog– beyond my wildest expectation when I started this project  6 years ago. Such strong support has led me to turn Shedding Light On the Cancer Journey into an E-book, which I’ve published on Amazon:

http://www.amazon.com/dp/B004T3331M

The easiest way for me to describe what this book is about is to explain what it is NOT about:

This book is NOT about how to cure your cancer. I don’t know anything about that– my husband John was not cured. Nor is it about being a cancer survivor, because John did not survive. He did, however, triumph over his disease– not by “beating it”, but by refusing to allow it to diminish his quality of life. He was not cured, but he was definitely healed.

This book is not about diet and exercise for cancer patients.

This book is not about how to become a cancer survivor. John’s physical body did not survive.

This book is not about alternative medicine for cancer patients– although it does discuss some complementary modalities that we found very helpful not only for easing the discomforts and pain of the physical body but for engendering a sense of deep peace as well.

So then, what IS this book about? Read what others who are walking down the cancer road have said about Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze:

You have created an incredibly valuable book. As a Professional Patient Advocate, I can tell you the experiences you are sharing through your first-person voice are amazingly common and your solutions are very direct and very accurate. This is information that only comes, unfortunately, from first-hand experience. Your book is like no other on the topic of any kind of cancer; you combine education with real-life emotion. This is “the bible” on colon cancer from the patient’s perspective. Your e-book serves a vital need. You are helping more people than you will ever know. Thank you. (Sheryl Kurland, Patient Advocate, Orlando Patient Advocates)

I cannot begin to tell you how helpful and meaningful your writing is. My father was just diagnosed with colon cancer stage 4 and I’m frantically searching for knowledge to help us with what lies ahead. Thank you for the priceless information (so far no one has even mentioned RFA to us or went through aspects of chemo you’ve pointed out) and the inspiration you’re so generously providing. It is such a help for people in our situation. (From the daughter of a colon cancer patient)

Your book has helped me to understand the pros and cons of the road ahead. (From Kaitlyn, a reader)

The web is packed with “inspirational” babble, “survivors” success stories and the like. I praise your effort in publishing a factual, clinical account of what your husband has been through. It helps a lot more than uplifting pats on the shoulder and gives me the chance to explore new alleys in the CRC nightmare my mother is facing. (Nuno Zimas, son of a colon cancer patient)

Perhaps you are wondering: why did this woman spend a year of her life writing down her husband’s experiences in such minute detail, when she will make no money whatsoever from the sale of her book? (see below for where any profits will go)

The answer is this: only someone who has been through the cancer experience can possibly understand the headaches and heartaches of this journey. Our doctors told us that we were the most educated and proactive patient/family team they had ever encountered– and yet, we were so often completely clueless about why our medical situation was unfolding in the way that it was. We often said to each other: if we can’t figure out what’s going on, what about all the others– those who are too sick, too weak, too tired to do their own research, unable to stand up to their doctors? What happens to them?

This book is a way of taking all of our suffering and dedicating it to the benefit of others with the intention of minimizing their suffering. Each person who purchases a copy of this book will, in turn, be supporting many others who devote their lives towards building the foundation for peace and freedom from suffering for all beings in this world (see below). $9.99 to benefit from this kind of  knowledge that can only be gained through hard experience– and to be benefiting others in return? This is  mutual support in action.

HOW CAN OUR EXPERIENCE BENEFIT YOU DIRECTLY, AS A PATIENT OR CAREGIVER TO A CANCER PATIENT? Here is just some of the information contained in this book that you will not find anywhere else:

An effective alternative to the long, drawn-out agony and uncertainty of chemotherapy when faced with liver or lung mets:

an approximately 2-hour procedure  which requires only an overnight stay in the hospital– with side effects that were, at worst, a week of flu-like symptoms. 

kill rate very similar to full surgery, effective for both liver and lung metastases.

 Detailed answers to every imaginable question about this modality, based on our first-hand experience and extensive interviews with every interventional radiologist at our hospital. My husband  was a world pioneer in RFA, in that he had 7 separate procedures– more than any other patient in the medical literature, according to our interventional radiologist.

Why  a PowerPort can make your life so much easier (IF you understand how it works and how to make the hospital hierarchy work for you) or become a source of frustration (if you don’t):

which medical personnel can access your port and where to find them

steps you should take BEFORE blood draws and CAT scans that your doctor may not know about (ours did not)

basics of good port protocol to prevent infection

A simple protocol for getting out of the hospital fast, including how to transition from  a pain pump to oral pain medication with a minimum of trauma. John printed this self-devised protocol out and discussed it with his doctors before every surgery. They were uniformly delighted to comply—never the slightest static.

Mind-altering drugs in your chemo cocktail– forewarned is forearmed

Facts about pain control that were never explained to us– these are points with which every patient/caregiver should be intimately familiar:

Trouble-shooting pain control: family members are the first line of defense

 How to recognize problems and prevent side effects before they occur    

Astonishingly effective alternative modalities

Simple in-home tools that really help to ease pain

Blood clots and IVC filters: what we learned the hard way and what every patient needs to know to avoid unnecessary complications

Changes in the patient’s mental status: warning signs and possible causes that can be reversed

Strategies for dealing with the unwanted changes that come with cancer

OTHER THAN FIRST-HAND EXPERIENCE, WHAT UNIQUE QUALIFICATIONS DO I HAVE TO WRITE ON THIS SUBJECT?

My 29 years of active hospice work with a hospice that is leading the way for contemplative care in this country have taught me how to be present with suffering. I understand very clearly that there is a time to “do” and a time to just be.

I have been mentored for 22 years in pain control basics by a very highly-skilled and experienced hospice nurse who knows much more about pain control than most doctors and actively uses her knowledge every day of her life. She also happens to be my dearest friend, which means that we talk about pain control issues as routine conversation.

Teaching how to be a compassionate presence to new hospice volunteers, nurses and social workers and new hospice volunteers for the last 10 years framed my determination to attempt the same task with my husband’s doctors and nurses.  My husband, who originally denounced this as wildly inappropriate and overreaching, was soon converted when he witnessed my somewhat astonishing success with his arrogant and distant surgeon.  Through our joint efforts, many doctors and nurses learned that opening their hearts actually led to better,  more effective medical care.  As a result of this, I have a working understanding of doctor-think.

My husband and I actually succeeded in changing three key flaws in the way medical care was delivered in our HMO in ways that made cancer treatments much less stressful for all cancer patients. My goal is to save all future patients from the time we spent and frustration that we encountered by sharing what we learned directly.

 This E-book can be read on any PC or Mac, Ipad, Ipod Touch, Blackberry or Android. Just download “Kindle for PC” or “Kindle for Mac” by hitting the button on the right side of the Amazon screen– the reader is completely free to install and takes  just a minute or two. No tech know-how at all required! And once you do that, you can take advantage of a fairly amazing bonus: Amazon is giving away free E-books every day on their website. Apparently their offering changes on a daily basis– check it out…

I will not make any monetary profit from the sale of this book. All proceeds will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world. Their constant prayers on John’s behalf and the gentle guidance of Tulku Orgyen played a vital role in John’s ultimately serene death.

You might also want to check out my new notecards, created with the same intention and the same goals: http://dharmakaleidoscope.wordpress.com/2011/07/15/dharma-kaleidoscope-notecards/

Posted in cancer staging, cancer treatments, caregiver to cancer patient, chemo toxicity, coping, doctor patient communication, doctor patient relationship, end of life, hospice, hospitalization, medication issues, patient advocate, side effects of cancer, side effects of cancer treatments, Uncategorized | Tagged | 2 Comments

TUBE FEEDING THE DYING PATIENT

A doctor’s eloquent take on why tube feeding is a nightmare both for the dying patient and for their loved ones: http://well.blogs.nytimes.com/2014/08/21/food-and-the-dying-patient/

If you’re not swayed by the doctor’s opinion, I strongly suggest that you read the comments at the end of this article.

May all benefit.

Posted in end of life | Leave a comment

GREAT BEDSIDE MANNER DOES NOT NECCESSARILY MEAN SKILLFUL DOCTOR

As illogical as it may sound,  choosing a doctor based on his/her kindness and great bedside manner is not always the smartest decision– this is advice coming directly from two kind doctors.

One of the two doctors is the author of a highly recommended read: Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care, by Marty Makary, M.D. The other was one of John’s own doctors. More on that later.

Makary drives home his point with a story of two senior doctors from his time as a young resident. Once you hear the nicknames given to these two, you will never forget the illustrative story– promise. The residents referred to the pair as The Raptor and The Hodad.

The Raptor was like a bird of prey, feared for his rapacious attacks on his hapless resident victims. He was blunt to the point of verbal abuse, prone to screaming and completely insensitive to the feelings of others. This behavior was unfortunately not confined to just junior doctors; he  was rude and brusque with patients and their families as well, an equal opportunity insultor. Given a choice, no one wanted him as their doctor. He was, however, a brilliant surgeon. He was fast and efficient and his technique was impeccable. He never made a mistake. No doctor in that large hospital had a lower complication rate.

The Hodad, on the other hand, was every patient’s dream doctor. He was genial and kindly, a great listener with a kind word for everyone. His patients worshipped him. But his hospital nickname was an acronymic tell-all: Hands of Death and Destruction. He was an inept surgeon with one of the highest complication rates in the hospital. He had poor judgment and practiced outdated medicine. He was infamous for operating on patients who didn’t need surgery. But even the patients who had been victims of one of those disasters still wanted him as their doctor because he was such a nice guy. No one wanted The Raptor.

This story rings especially true for me– because John had a Raptor-like colon surgeon. I’ve described in other posts how he totally came unglued and started screaming at the top of his lungs at me on our very first meeting, right after John’s near-death emergency surgery. “Hostile” would be a massive understatement. A complete asshole. When it came time for John’s reconnection surgery, we went to the Chief of Surgery, who had filled in for the Raptor on one of John’s post-surgical checkups. This guy was one of the kindest, gentlest doctors you could ever hope to meet. His genuine compassion towards John brought me close to tears.

So we showed up in his office and told him, “We want you to do this surgery. We can’t stand the Raptor and his rudeness.” His response totally caught us off guard. He said that he would be happy to do the surgery, but that he would advise us that this was NOT a good decision. He understood about our reaction to John’s previous surgeon, and confided that we were certainly not the first patients to feel this way. He told us that this rude doctor was “the very best we have”, that he was an excellent surgeon who did nothing but colon surgeries. The chief, on the other hand, was a general surgeon and did way fewer colon surgeries. It came down to a simple choice: the most skilled doctor or the kindest doctor. He told us that he would go with whatever we decided, but that he felt that it was important that we fully understood the parameters of our decision. We ended up biting the bullet and going with the Raptor.

Which doctor would you choose?  Based on likeability alone,  almost every  patient would choose The Hodad. But what if patients had access to information on the doctor’s performance record, just as we as consumers can learn virtually everything about any one of hundreds of thousands of  products by reading buyer reviews on Amazon? Did you know that hospitals already have all of this information in their database, about every doctor in their system– but  that doctors’ performance records  are carefully kept from the public? If you knew that the doctor you were considering to do your surgery had a miserable track record and a high complication rate, would  that influence your choice?

This kind of transparency in the medical field is exactly what Dr. Makary,  colleague of  The Raptor and The Hodad, is strongly advocating. But, since we do not have that option at the moment, he did add one intriguing additional suggestion about choosing a doctor: when faced with  unclear or vague symptoms with no clear diagnosis, this is the time when the best doctor is the one who has the patience to sit with you and ask many questions without getting frustrated. This is the time for a kind and compassionate doctor who is able to look at the facts from many different angles while remaining calm and determined. A Raptor-like doctor would be a nightmare diagnostician. But The Hodad wouldn’t be much better, since he had a history of making bad decisions.

Again, I can speak from personal experience. When I had my own disturbing health issues in the last year of John’s life, I found myself in the hands of an incompetent doctor with no patience, no compassion, very little in the way of diagnostic skills and a very disturbing fascination with inserting various probes into many openings in the human body. I was dangerously close to becoming a victim.

How does the average patient sleuth out the good doctors? Makary suggests that asking a nurse is a great way to start. Medical personnel who work with doctors know who is good and who is not. The key question is: would you want this doctor to operate on you? In retrospect, had I paid more attention to the ever-so-subtle facial expression of John’s GP when I told him I had chosen the demented doc described above, I would have known that this doctor did not have a stellar reputation among his peers and that the GP’s answer to this question would be a resounding “no”. But that was a time when I knew far less than I know now.

May our own hard-earned knowledge and the wise advice of Dr. Marty Makary empower your own medical choices. May all future patients benefit.

 

Posted in doctor patient relationship, hospitalization | Tagged , , , | 1 Comment

CANCER PATIENTS SUFFER FROM POOR PAIN CONTROL

According to a new study in The Journal of Clinical Oncology,

http://well.blogs.nytimes.com/2012/09/20/poor-pain-control-for-cancer-patients/

a recent survey of over 3000 cancer patients found that one-third felt that they needed more painkillers to fully treat their symptoms. One month later, when these patients were interviewed again, the percentage experiencing uncontrolled pain remained the same. As the article concluded, “Their pain, in other words, had not been treated.”

Disturbing news, considering that a groundbreaking study in the late 1990’s with similar findings led to  what this article referred to as “a firestorm of new initiatives” aimed at mandating better pain control. Now, more than 2 decades later, not much has changed.

Although this article touches on some of the complexities of good pain control, it looks at the issue from the doctor’s point of view and offers no solutions.

I’d like to offer some suggestions from the patient’s/caregiver’s perspective: what you can do right now to get the pain control you need.

Understand very clearly that all patients have the right to adequate pain control.

 Know that most oncologists are NOT very skilled in pain control. Their training in pain control is generally minimal and their bag of tricks is  limited.

 Almost every hospital has a palliative care team and one or more pain control specialists. If your pain is not well-controlled, insist on a referral to the pain control team or palliative care team immediately. This is your right!

Myth-debunking fact: you do not have to have a terminal diagnosis in order to receive palliative care. Dealing skillfully with uncontrolled pain  is a major aspect of palliative care, but palliative care is absolutely NOT limited to the end of life.

Our experience was that almost all of the doctors we encountered  during John’s hospitalization drastically over-estimated their own capacity to deliver effective pain control. As a result, not a single one of them ever offered a referral to the resident pain control specialist. When we finally demanded palliative care, the head of that department took one look at John’s pain control regimen and pronounced it “ridiculous”. Shortly after she took over John’s case, he was resting comfortably for the first time.

Bottom line: you can’t get what you need if you don’t know that it is available– and you don’t ask for it. When it comes to getting the pain control you need, he who hesitates will likely suffer needlessly.

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MAJOR HOSPITAL REFUSES TO PRESCRIBE NEW COLON CANCER DRUG

Welcome to the new medical paradigm, the shadow of what  is yet to come. The tip of the iceberg is now exposed, with more unsettling revelations sure to follow:

http://www.nytimes.com/2012/10/15/opinion/a-hospital-says-no-to-an-11000-a-month-cancer-drug.html?_r=1&

The most salient point of this New York Times article from October 14, 2012 is not what it would like for us to infer (that Memorial Sloan Kettering Hospital has decided not to prescribe Zaltrap to its patients as a way to contain the escalating costs of medical care) but what it tells us so casually:

1. Two of the MSK doctors who urged this position have a paid relationship with Genentech, the makers of the allegedly less expensive drug (Avastin) which is a direct competitor with Zaltrap.

2. The authors of this article imply that  the main difference between Avastin and Zaltrap is the relative cost and that this decision to not prescribe Zaltrap has little negative impact on colon cancer patients. However, as a current ColonClub member who is actually taking Zaltrap points out, there is a potentially significant difference between the two: Avastin targets only one tumor growth receptor, whereas Zaltrap targets three.

How significant that difference is and whether targeting two additional receptors justifes the substantially higher cost remains to be seen. What is more troubling is that the authors, who have business ties  with the manufacturer of the competing drug have glossed over this difference altogether.

2. The FDA evaluates new drugs only on safety, with no consideration of cost effectiveness. Physician guideline- setting organizations rarely consider cost to the consumer in their decision process.

3. Once a cancer drug is approved by the FDA, Medicare is required by law to cover that drug. This sounds reasonable and fair,  until we learn that a 2003 law requires that Medicare  must pay whatever price the drug manufacturer sets — plus a 6% cushion (!!)

4. Both of the exorbitantly-priced drugs in question, Zaltrap and Avastin, offer a mere median 1.4 additional month of life  when compared with standard chemotherapy alone. And this at a cost of $5000-$35,000 per month, with a percentage of that cost paid by the patient him/herself.

Is it any wonder that out healthcare system is increasingly described as unsustainable?

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DO CANCER PATIENTS KNOW BEFORE THEY’RE EVEN DIAGNOSED?

I’ve wondered off and on about this possibility ever since John was diagnosed, but hadn’t really given it a thought– until yesterday. In searching for my passport, I came across John’s and was very surprised at my reaction to seeing that photo of him.

This had nothing at all to do with wifely sadness at unexpectedly finding a photo of my beloved husband. It was his eyes.  They had the same haunted, far-away look that I remember so well after his emergency colostomy and subsequent diagnosis of cancer. One of his best friends (himself a survivor of a triple-bypass heart surgery) described it with amazing succinct-ness upon seeing John several days after he was released from the hospital:

“You look like the guy who just saw the light at the end of the tunnel.”

So, when I unexpectedly came upon this passport photo and remembered that look (and the deep sadness that it engendered as I thought how this must be for him), I immediately concluded that the photo must have been taken sometime soon after he was diagnosed. A check of the date the passport was issued was also illuminating in a most unexpected way: I really could not remember whether he was diagnosed in 2004 or 2005 (!!) Ah, perhaps it is true about how the passage of time heals painful memories…

To my great surprise again, my notes informed me that the passport photo was taken 7 months BEFORE John’s emergency surgery, thus providing the answer to the seemingly rhetorical question posed in the title of this post. In John’s case, after seeing his eyes in that photo, the answer is a definitive “Yes.” The bright light of insight illuminated all of my previous musings in  an instant.

He DID know, in some deep way that he was unable to accept or articulate. He swore so many times in the four years that followed his diagnosis that he never had any of the possible warning signs: no blood in the stool, no changes in bowel habits, no unexplained aches or pains, no digestive issues…

And yet, as I often commented to friends, he was like a man possessed. We had just sold our residence of many years and bought a piece of raw land on another island where we were planning to build the home that we planned to live in for the rest of our lives. So there was a lot going on. But John was a general contractor and had built many homes for us and for others in the past. He was an old hand at this, and was delegating most of the hard labor to a young and energetic crew.

He had always been legendary for the speed with which he completed building projects– but his behavior was light years beyond that focus now. He set deadlines for various construction milestones that even those who knew him well deemed impossible to meet. None of them were missed by more than one day, and several were met before even his own wildly optimistic prognostications.

So the fact that he had lost a significant amount of weight was easily explained by his hyper-kinetic activity. His weight had been slowly but steadily increasing up until the beginning of this project, so we took the weight loss to be a good thing. His sometimes devastating obsession with “getting things done”  and the oppressive level of anger that accompanied it was decidedly not  a good thing. I was often baffled and confused– and hurt. There was no discussing any of this with him.

Looking back, I really think– almost know, after seeing this photo– that he did know that something was very wrong inside his body. But he had no coping mechanism for dealing with this utterly unwanted possibility. He had spent his whole life successfully convincing himself that he was invincible, immune to decay and death. Hence, all the seemingly inexplicable anger– directed outward, but engendered by a body that had suddenly betrayed him. He was face-to-face with his worst fears, and facing the impossibility of living the life for which he had so carefully planned.

In a very strange way, I found solace in this old passport photo. Everything is illuminated (the title of a very obscure favorite foreign film). Everything makes sense. There is something awe-inspiring in this revelation, that we humans can have this kind of deep knowing– and comforting for me, in that John came to understand that all that occurred was not a curse, but a paradoxically precious gift to him: the gift of time. He, who never wanted to linger in a state of illness or incapacity, was ultimately so very grateful to have had the gift of those last four years in which to savor and complete every aspect of his life and to die in utter peace, with no regrets.

Posted in caregiver to cancer patient, end of life, widow | Tagged , | Leave a comment

HOW DOCTORS DELIVER BAD NEWS TO PATIENTS

Continuing with my previous post, “How Long Do I Have, Doctor?”, my reading of Death Foretold has revealed more illuminating information about doctor-think and the ways in which a doctor’s sometimes unconscious decisions about how to present information about the probable course of his patient’s disease impacts that patient.

Consider this sobering fact:

Whether and how physicians communicate prognoses may be affected by self-interest. Physicians may choose to offer a particular prognosis, whether favorable or unfavorable, if they feel that it will encourage the patient to comply with their recommendations, with the professional or financial advantages that may attach to this. For instance, patients may be encouraged to enroll in trials or experimental chemotherapy; enrollment of patients in such trials, regardless of whether it benefits the patient, can advance a doctor’s career. These behaviors are not usually as sister as the doctor wanting to profit financially from a patient or frankly deceiving a patient: physicians themselves are often not consciously aware of these implications of the use of prognosis. [p.54]

Or, from the department of “bedside manner”, Christakis offers this deplorable and unfortunately common professional tactic for avoiding emotionally-charged conversations:

“Terminal candor” or “truth dumping” is doctor-speak for the practice of unduly rapid or excessively comprehensive prognostication. They deplore it as irresponsible, though they recognize that it is not uncommon. Truth dumping amounts to an avoidance of responsibility, in several senses: physicians thereby avoid having to engage in a lengthier, more humane interaction; avoid having to face or discuss the limitations of their ability, and avoid having to address the implications of such bad news for patients. They can, however, conveniently claim that they have told the patient “the truth”. [p. 109]

In both of the above , it is clear that– contrary to what patients would like to believe– often their doctors choose (albeit often unconsciously) to allow self-interest to  formulate how they communicate with their patients. An understanding of this possibility could well be an important factor in the patient’s evaluation of the course of action that will provide the best likely outcome for he/she as a unique individual. In other words, the assumption that your doctor always has your best interests at heart may be a faulty one, given this doctor’s exhaustive survey of his medical peers.

The author reveals several other ways in which doctors create emotional distance between themselves and their patients:

According to physicians, the communication of unfavorable prognosis should take place in stages. (p.108) In giving the prognosis in stages, doctors protect themselves. Communicating bad news gradually is a means of discouraging “meltdowns” and extreme displays of emotion in patients, outbreaks that might be unpleasant or time-consuming for physicians to cope with.  The patient’s experience and expression of emotions are thus both controlled. (p. 110)

Although this tactic is certainly pragmatic in terms of allocation of time and budget constraints, it effectively minimizes the human connection between the doctor and his patient by partitioning off  and thereby ignoring the tremendous emotional and spiritual implications of a “bad news” prognosis that ultimately implies that death is unavoidable.

Doctors may also use statistics to distance themselves from their patients, while appearing quite knowledgeable and professional:

   Indeed, using statistical prognostication is a way to prognosticate  to a patient while not really prognosticating about a patient. Such prognostications, while appearing to have scientific  authority and significant content, are at the same time devoid of affect and of particularity. This information is not related to feelings or hopes that patients may have about their future. Finally, it ignores the fact that patients are often less able than their doctors to make sense of statistical estimates. [p.116]

Worse yet, in John’s case, his surgeon– who was apparently exasperated by John’s quoting of survival statistics for colon cancer patients with a similar diagnosis– used statistics as a slap in the face. Saying, “You want statistics? I’ll give you a statistic: you have a 10% chance of living for 5 years.” (!!!) This devastating comment was delivered to a colon cancer patient who has just survived emergency surgery (and subsequent diagnosis of cancer for which he was completely unprepared) and was now facing  liver mets. The surgeon’s cruelty was intentional, clearly aimed at establishing his own power at the emotional expense of his patient.

Here’s one final really tragic reality from this book:

  Patients may be twice removed from the truth of their disease and its prognosis:  first, because physicians themselves generally believe the prognosis to be more favorable than it actually is; and second, because they generally do not communicate their actual beliefs to their patients. [p. 123]

The author notes that doctors find it more acceptable to communicate  their true opinions about prognosis to their colleagues than to patients and their families. Note this sad example: of a young doctor’s experience doing rounds in the ICU with the medical team:

Our attending doctor, who was a world-famous intensivist, accompanied us into a patient’s room. The patient was an elderly woman who was critically ill and comatose and had severe lung failure. The room was filled with her family, and they asked the attending if their mother and grandmother would survive. My attending said it was “impossible to say” and  that “only God knew.” After we left the room, when we were further down the hall, I said to him: “You’ve been practicing intensive care for 20 years; you literally wrote the book in this field. Surely you must have some idea about whether that patient would live.” And he said to me: “Oh, yeah. She’s not going to make it.” And that was it! I was shocked at the discrepancy between how precise and definitive he was willing to be with us and how evasive he was with the family. Of course, he was right: the patient died 24 hours later.

In withholding this very vital prognosis from his patient’s family, this otherwise very competent doctor did a shocking disservice. The 24 hours between his casually tossed-off prognosis to his colleague and his patient’s death could have been  a time for the family to pull together in facing the inevitable and to create closure with their loved one. In place of comforting memories that  might have offered a lifetime of consolation for the survivors, the family was effectively abandoned by this doctor, utterly unprepared for the death that he alone knew was coming.

How can patients and their families work around  this kind of doctorly aversion to truth-telling to get the honest prognosis they need? I wish I had an easy answer. All I can offer is based on the sum total of our interactions with John’s doctors and their sometimes massive egos. It seems fairly obvious to me that in the case of the story above, the attending doctor was guilty of the same kind of power trip that John’s surgeon pulled on us. Since the ultimate root of gratuitous displays of power is the ego, a carefully-crafted appeal to that ego (while appearing to bow before it) might have a chance of extracting the desired honest prognosis. Consider this possible response to the doctor’s stonewalling:

Dr. X, I am asking you for your carefully considered professional evaluation [heavy emphasis on this term, with the subtle implication that the doctor’s previous evasion was not totally “professional”– which encourages him to demonstrate his vast knowledge by giving you the true prognosis] on how much longer my mother has to live. We have so much respect for your vast experience in cases such as hers [gives the illusion of pandering to his power]. If her time is short, there is so much that we need to do and every minute has enormous value. [You, her doctor, have a moral responsibility here– and I’m not going to let you slither out of this one.]

Posted in doctor patient communication, doctor patient relationship, end of life | Tagged , , , , , | 2 Comments

HOW LONG DO I HAVE, DOCTOR?

Death Foretold: Prophecy and Prognosis In Medical Care is  a book I learned about from one of those perenially informative  articles in the New York Times medical section. Even though I’ve just barely begun to read it, there is a scary rate of confirmation of my own conclusions about what our doctors do and do not tell their cancer patients about their condition. I learned, for instance, that:

A recent five-year, thirty-million dollar study showed, sadly, that even though doctors in the study  were given comprehensive information on their patients’ prognosis and preferences for care, the physician acknowledged  or remembered receiving the information only 59% of the time– and reported discussing this information with the patient only 15% of the time!

The patients themselves confirmed a low rate of discussion with their doctors about their prognosis and their preferences for care; only a minority reported having a discussion with their doctor– despite the fact that the patients in the study were seriously ill with a high risk of death and despite the fact that a majority said that they would have welcomed such a discussion. Sadly, most of the patients in this study went on to experience deaths that, as the investigators documented in rich detail, were very unsatisfactory.

The author goes on to state a very alarming conclusion from his exhaustive research:

When therapy is available, physicians will blithely ignore prognosis.

Taken to its logical end, this mentality leads to patients being treated–even when that treatment is known to be futile– until the moment of their death. Yet the author reflects that “death is increasingly viewed [in modern society] as a passage that can be actively anticipated and therefore managed. To enact these popular visions of death, however, patients must rely on reasonably accurate prognoses from professional physicians.”

To contrast the patient’s need for an accurate prognosis with this quote from an internist is to begin to comprehend how the doctor’s mindset often results in his concealing or avoiding the sharing vital information with his patient :

I get so damn nervous when I have to make a prediction. I feel as if there is no way that I can be right and that if I make a mistake my patients will be angry or hurt. My colleagues would think I was foolish to hazard a prediction in the first place. The way I see it, the only thing I can say for sure about prognosis is that you are bound to be wrong– unless you are so vague that the prediction is meaningless. And people will blame the doctor no matter what: if he predicts a good outcome and a bad one occurs or if he predicts a bad outcome and a good one occurs. You just can’t win.”

The net result of this kind of physician aversion to prognosis is that the patient is sadly, vitally dis-served. My takeaway, based on John’s experience with his doctors (and now very strongly re-inforced by this book) is that cancer patients who really want to know what the future is likely to hold for them must strongly take the initiative in conversations with their doctors, and continue to press until they receive the information they need and have the right to receive.

Stay tuned for more on this topic as I make my way through this book.

 

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