• Lay media does a poor job of keeping a balanced perspective when reporting cancer information
• Study found that 95% reported exclusively on aggressive and expensive treatments such as chemotherapy, while only 13% mentioned that these treatments can fail
• Less than a third put their article in a balanced perspective by including a description of the adverse side effects and cost of cancer treatments; Only 8% mentioned the possibility that people die of their cancer
• Researcher from the study concludes, media “…play to this fear (of dying) by reassuring us that there are treatments that work, and that there are cures that are effective. That is, they tell us what we want to hear”
• That is why we are working to empower patients with accurate and straight-forward information on our site and our companion site www.patientresource.net

How well does the media do in reporting to you about the “hope” of cancer advances, while keeping a perspective that this is still a life-threatening disease that kills over a half million people each year?

Not very well, according to a study published in the Annals of Internal Medicine in March, 2010 by Drs  Fishman, Ten and Casarett from the University of Pennsylvania. They examined over 400 articles published in the lay press (i.e.: a public audience, not a medical journal) and found that a whopping 95% reported exclusively on aggressive and expensive  treatments –such as chemotherapy, bone marrow transplantation and radiation therapy—while only 13% mentioned that these treatments can fail. Moreover, less than a third put their article in a balanced perspective by including a description of the adverse side effects and cost of cancer treatments.

Please understand that I am not against the reporting of promising advances and the progress we are making, but I do think the media can do a better job. For example, I was recently interviewed on a new drug advance for melanoma, and was quoted (appropriately) that this was “ a single, not a home run”, meaning that is one of the first survival advances in the treatment of advanced melanoma, but probably won’t be used as a single agent to increase cure rates of melanoma. It was not reported that the drug can have serious side effects and that some patients died as a result of the treatment! On the one hand, if you are a patient for whom all other treatments have failed and you are facing the prospects of dying in the coming months, then getting a powerful drug with serious, sometimes life-threatening side effects may be your only choice. Or, if you have had potentially curative surgery but still have a risk of relapsing later on, you might have some pause about taking a drug that may interrupt or halt your present quality of life or even shorten your life. Doctors and cancer patients make these kinds of decisions every day based upon estimating the probability of success or failures among groups of patients. However, at the level of an individual patient, we don’t have a crystal ball! Some patients do better than expected and other do worse. We all have to make our best decision about the whether the benefits of a particular treatment outweigh the potential risks and complications and then accept the outcome as we go forward.

I’ll quote from a blog by Dr Casarett, one of the researchers on this study. “Of course, it’s not such a terrible thing if we can’t find what we need about cancer in newspapers and magazines. These are just one source of information that’s available to us. If we don’t find what we are looking for in one of these articles, we can look somewhere else. That’s why the real problem with these articles is not the information that’s missing from them, but rather the biased picture that they give of what it’s like to have cancer…..The most worrisome thing we found in these articles, though, was the way they carefully avoid mentioning death and dying. In fact, only 8% mentioned the possibility that people die of their cancer….So these articles play to this fear (of dying) by reassuring us that there are treatments that work, and that there are cures that are effective. That is, they tell us what we want to hear.” The full blog story can be found at www.huffingtonpost.com/david-casarett-md/cancer-news-offers-reader_b_499540.html.

Of course, this desire–indeed our passion– is to inform and educate cancer patients so they can learn about what they need to know, not just the things we want to hear. That is why we started Patient Resource Cancer Guides and its website www.patientresource.net and www.mycanceradvisor.com, so that cancer patients could learn about all aspects of the cancer journey, including the more difficult issues of pain management, treatment options and their complications, and the process of death and dying. We hope that empowering patients with accurate and straight-forward information will make a difference in their lives and the lives of their loved ones.

The abstract of the publication cited above is:

Fishman J, Ten Have T, Casarett D. Arch Intern Med. 2010 Mar 22;170(6):515-8.

Cancer and the media: how does the news report on treatment and outcomes?

BACKGROUND: Cancer receives a great deal of news media attention. Although approximately half of all US patients with cancer die of their illness or of related complications, it is unknown whether reports in the news media reflect this reality. METHODS: To determine how cancer news coverage reports about cancer care and outcomes, we conducted a content analysis of US cancer news reporting in 8 large-readership newspapers and 5 national magazines. Trained coders determined the proportion of articles reporting about cancer survival, cancer death and dying, aggressive cancer treatment, cancer treatment failure, adverse events of cancer treatment, and end-of-life palliative or hospice care. RESULTS: Of 436 articles about cancer, 140 (32.1%; 95% confidence interval [CI], 28%-37%) focused on survival and only 33 (7.6 %; 5%-10%) focused on death and dying (P < .001, chi(2) test). Only 57 articles (13.1%; 10%-17%) reported that aggressive cancer treatments can fail, and 131 (30.0%; 26%-35%) reported that aggressive treatments can result in adverse events. Although most articles (249 of 436 [57.1%]; 95% CI, 52%-62%) discussed aggressive treatments exclusively, almost none (2 of 436; [0.5%]; 0%-2%) discussed end-of-life palliative or hospice care exclusively (P < .001, chi(2) test), and only a few (11 of 436 [2.5%]; 1%-6%) discussed aggressive treatment and end-of-life care. CONCLUSIONS: News reports about cancer frequently discuss aggressive treatment and survival but rarely discuss treatment failure, adverse events, end-of-life care, or death. These portrayals of cancer care in the news media may give patients an inappropriately optimistic view of cancer treatment, outcomes, and prognosis.

Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, 19104, USA. fishman1@mail.med.upenn.edu

• Day before surgery can be an intimidating and confusing time
• Patients who do well the day before surgery describe being active with others
• Contrary to popular opinion, the days before surgery should be an active time with good hearty meals
• Exercising beforehand can set back atrophy by not allowing it to get a head start
• Remember the details of your instructions before surgery

The day before surgery can be an intimidating and confusing time. Anxiety about the outcome of the operation and long-term survival can be alleviated by knowing facts about surgery and tips patients have found useful in preparing.

First, stay active and eat well right up until the night before surgery. Unless you’re having colon surgery which often requires a bowel prep and an extra day of a restricted diet before surgery, go ahead and beef up! Contrary to popular opinion, the days before surgery should be an active time with good hearty meals. I tell many patients to treat themselves to a delicious meal in the days leading up to surgery and, depending on the operation, even the night before surgery. You won’t be eating much after the operation for a couple days at least, so to minimize the period of going without nutrition, its good to get some good calories in the system. Nutrition is also known to strengthen your immune system, which sometimes needs to work well during your recovery.

Along the same lines, stay fit. Go ahead and go to the gym and get some good exercise before surgery. The days after surgery are like being an astronaut in that your muscles get weak from lack of use (called atrophy). Exercising beforehand can set back atrophy by not allowing it to get a head start.

Here are some more facts that are good to ease fears. The data on surgery demonstrate that the operation itself is very standardized. In my field of pancreas surgery for example, nearly every experienced pancreas surgeon in the world performs essentially the same operation with minimal variation. Many patients are also worried about general anesthesia, perhaps based on scary movies or public legends of the olden days, but general anesthesia today has a major complication rate of only about 1 in 100,000. Anesthesia is very safe in the modern era, and its safety profile in medicine is among the best of any medical intervention.

Patients who do well the day before surgery describe being active with others. As a general note on patients that I see who are depressed and anxious, the more someone has a community, the less likely they are to experience depression or anxiety. Movies, performances, getting together with friends, and family gatherings are some of the activities patients find helpful in making the day before surgery a pleasant experience. Often times patients describe a great experience surrounding themselves with positive friends—people who are optimistic and enjoy life.

Finally, remember the details of your instructions before surgery: Nothing to eat or drink by mouth 8 hours before your scheduled surgery time, and bring your most recent CAT scan with you if your surgeon does not already have it.



Blog Highlights:

• While drinks like soda are notoriously loaded with sugar, the direct impact on pancreas cancer remains unknown
• Attention on drinks and cancer began when a flawed study from Harvard was published years ago in the very prestigious New England Journal of Medicine
• For now, keep in mind that while sugar-loaded may not cause cancer, drinking more than a moderate amount of soda is bad for your health

Every few years a study comes out suggesting that a drink like coffee or soda is associated with cancer, and pancreas cancer is the most common type implicated.  The attention on drinks began when a flawed study from Harvard naming coffee as a cause of pancreatic cancer was published years ago in the very prestigious New England Journal of Medicine.  Well that may have been one of the most embarrassing studies that journal ever published.  The design flaw of the study was clear to everyone after the publication.  The sigh of relief lasted a while until a theory surfaced that the sugar in soda could overstimulate the pancreas.   This theory is based on the premise that the massive sugar load in modern day drinks is unnatural and the pancreas was not designed to handle such an over-stimulation.  You see the pancreas is responsible for sugar regulation, producing important hormones like insulin and glucagon to control a body’s uptake and use of sugar.

The truth is that while drinks like soda are notoriously loaded with sugar (several teaspoons worth), the direct impact on pancreas cancer remains unknown.  Some studies have suggested the association, like a recent study from the University of Minnesota published this year, but they have not had the statistical power to prove the association.  Demonstrating the association, if present, would take lots of patients.

Soda’s do not appear to be a direct cause of pancreatic cancer although I believe that future research may show how the sugar load is harmful to the pancreas.  For now, keep in mind that while sugar-loaded may not cause cancer, drinking more than a moderate amount of soda is bad for your health.  Furthermore, it is well-recognized that sugary drinks play a part in our American obesity epidemic–a problem rampant among children in particular.  And obesity is a known risk factor for cancer, heart attacks, and premature death.

Blog Highlights:

• It is important for the caregiver, for family members, and friends of a dying cancer patient to understand some of the basics about the physical act of dying
• Study finds that patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life
• Listed below are references on the internet that caregivers and families can go to about the death and dying process

Death is not an easy subject. As a consequence, there is too little discussion about it…even among loved ones. The videos shown above are a succinct and informative series for caregivers and loved ones in a family facing the emotionally difficult experience of watching someone go through the dying process. I know first-hand what this is like as both of my parents died from agonizing and mean-spirited cancers.

Death is a huge subject, and one that engages strong emotions. Every individual, and every family unit, faces this in different ways, for the human spirit and the sum of our life experiences are so unique!

It is important for the caregiver, for family members, and friends of a dying cancer patient to understand some of the basics about the physical act of dying and the issues associated with this process.  Hopefully, the four videos shown here will open up a dialogue and help in some small way to understand these issues.

Should a dying patient be shielded from their terminal state? In my opinion, no. That doesn’t mean that caregivers and patients should give up hope, but that they should be realistic in their expectations and be able to communicate the reality of the dying process in a loving and forthright manner. Knowing about the certainty of dying can oftentimes bring out intimate discussions with loved ones, including confronting fears about dying, that might otherwise not happen.

In a publication in the Journal of Clinical Oncology (April 10, 2010) on the topic: “Experiences and Attitudes of Patients with Terminal Cancer and their Family Caregivers toward the Disclosure of Terminal Illness”, the authors found that most patients with terminal cancer and their family caregivers preferred disclosure about their status. Patients who knew of their terminal diagnosis had a lower rate of emotional distress and a higher health-related quality of life. Patients who were informed had a better quality of life and fewer symptoms and a lower rate of emotional distress than patients who came to their own conclusion that they were dying based on their worsening condition.

Care at the end of life focuses on making patients comfortable. They can still have goals of maximizing their quality of life and receive medicines and treatments to control pain and other symptoms. Some patients choose to die at home. Others enter a hospital or a hospice. When my parents were dying of cancer, I found that the Hospice Program in our area was an invaluable resource to help us mange through this difficult time.

The goal of palliative or end-of-life care is to improve the patient’s and the family’s quality of life by preventing and relieving suffering. This includes treating physical symptoms such as pain, and dealing with emotional, social, and spiritual concerns. Below are two more informative videos, and I have listed references available on the Internet for caregivers and families about the death and dying process. Also listed are helpful websites, specifically for caregivers. Finally, I have copied (below) an excerpt from the National Cancer Institute that has some helpful information.

Physical Contact Can Be A Simple Way to Bring Comfort to Your Dying Loved One:

Changes In A Dying Loved One’s Eating Habits Can Be Discomforting to Caregivers:

FOR ADDITIONAL INFORMATION:

American Society of Clinical Oncology: http://www.cancer.net/patient/Coping/End-of-Life+Care

American Cancer Society: http://www.cancer.org/Treatment/NearingtheEndofLife/NearingtheEndofLife/index

Cancer Care: http://www.cancercare.org/get_help/special_progs/caregivers.php

Caregivers: http://www.caregivers4cancer.com/

Mayo Clinic: http://www.mayoclinic.com/health/cancer/CA00048

National Cancer Institute on end-of-life issues: http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient

National Cancer Institute on Care giving: http://www.cancer.gov/cancertopics/caring-for-the-caregiver

SUMMARY FROM THE NATIONAL CANCER INSTITUTE (see website for details)

The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life.”

1. How long is the patient expected to live?

Patients and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the cancer is located and whether the patient has other illnesses can affect what will happen. Although doctors may be able to make an estimate based on what they know about the patient, they might be hesitant to do so. Doctors may be concerned about over- or under-estimating the patient’s life span. They also might be fearful of instilling false hope or destroying a person’s hope.

2. When caring for the patient at home, when should the caregiver call for professional help?

When caring for a patient at home, there may be times when the caregiver needs assistance from the patient’s health care team. A caregiver can contact the patient’s doctor or nurse for help in any of the following situations:
• The patient is in pain that is not relieved by the prescribed dose of pain medication;
• The patient shows discomfort, such as grimacing or moaning;
• The patient is having trouble breathing and seems upset;
• The patient is unable to urinate or empty the bowels;
• The patient has fallen;
• The patient is very depressed or talking about committing suicide;
• The caregiver has difficulty giving medication to the patient;
• The caregiver is overwhelmed by caring for the patient, or is too grieved or afraid to be with the patient; or
• At any time the caregiver does not know how to handle a situation.

3. What are some ways that caregivers can provide emotional comfort to the patient?

Everyone has different needs, but some emotions are common to most dying patients. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways caregivers can provide comfort are as follows:
• Keep the person company—talk, watch movies, read, or just be with the person.
• Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
• Be willing to reminisce about the person’s life.
• Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
• Reassure the patient that you will honor advance directives, such as living wills.
• Ask if there is anything you can do.
• Respect the person’s need for privacy.

4. What are the signs that death is approaching? What can the caregiver do to make the patient comfortable?

Certain signs and symptoms can help a caregiver anticipate when death is near. They are described below, along with suggestions for managing them. It is important to remember that not every patient experiences each of the signs and symptoms. In addition, the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. A member of the patient’s health care team can give family members and caregivers more information about what to expect.

• Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient’s metabolism).

The caregiver and family members can plan visits and activities for times when the patient is alert. It is important to speak directly to the patient and talk as if the person can hear, even if there is no response. Most patients are still able to hear after they are no longer able to speak. Patients should not be shaken if they do not respond.

• Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient’s metabolism). Gently remind the patient of the time, date, and people who are with them. If the patient is agitated, do not attempt to restrain the patient. Be calm and reassuring. Speaking calmly may help to re-orient the patient.

• Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying).

Speak to the patient directly. Let the patient know you are there for them. The patient may be aware and able to hear, but unable to respond. Professionals advise that giving the patient permission to “let go” can be helpful.

• Decreased need for food and fluids, and loss of appetite (caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly).

Allow the patient to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient’s mouth and lips moist with products such as glycerin swabs and lip balm.

• Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area).

Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.

• Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake).

Caregivers can consult a member of the patient’s health care team about the need to insert a catheter to avoid blockage. A member of the health care team can teach the caregiver how to take care of the catheter if one is needed.

• Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities).

Blankets can be used to warm the patient. Although the skin may be cool, patients are usually not aware of feeling cold. Caregivers should avoid warming the patient with electric blankets or heating pads, which can cause burns.

• Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs).

Breathing may be easier if the patient’s body is turned to the side and pillows are placed beneath the head and behind the back. Although labored breathing can sound very distressing to the caregiver, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If the patient is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make the patient’s breathing more comfortable.

• Turning the head toward a light source (caused by decreasing vision).

Leave soft, indirect lights on in the room.

• Increased difficulty controlling pain (caused by progression of the disease).

It is important to provide pain medications as the patient’s doctor has prescribed. The caregiver should contact the doctor if the prescribed dose does not seem adequate. With the help of the health care team, caregivers can also explore methods such as massage and relaxation techniques to help with pain.

• Involuntary movements (called myoclonus), changes in heart rate, and loss of reflexes in the legs and arms are additional signs that the end of life is near.

5. What are the signs that the patient has died?

• There is no breathing or pulse.
• The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
• The jaw is relaxed and the mouth is slightly open.
• The body releases the bowel and bladder contents.
• The patient does not respond to being touched or spoken to.

The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient’s and family’s questions and concerns about the end of life should be discussed with the health care team as they arise.

Blog Highlights:

• Study that finds it is important that the patient, doctor, and familymembers have “end of life discussions.”
• These discussions are about how long the patient has to live, what the options are to prolong life, pain management, preferences for the final week of life, etc.
• Bringing these issues out into the open is an important strategy for facing death on your own terms
• “You don’t conquer the anxiety about dying, you meet it with courage.”

For cancer patients, their loved ones, and caregivers, facing end of life issues and the prospects of death can be a very difficult process to work through. Watch the video above about a study that finds it is important that the patient, doctor, and family members have “end of life discussions.” The study compared people who did and did not report having these discussions and found that, in their last week of life, the patients who did were 3 times less likely to be admitted to the ICU, 4 times less likely to be put on breathing machines, and 6 times less likely to be resuscitated. Also, patient’s family members reported improvements in their quality of life and the grieving process.

“End of life discussions” is about how long the patient has to live, what the options are to prolong life and keep the patient comfortable, what kind of care the patient wants to receive in the final week of life, and other end of life issues. For example, talk to your doctor about whether or not you want to be on breathing machines, whether or not you want to be resuscitated or put on artificial nutrition and antibiotics to prolong life, and so forth. Bringing these issues out into the open can be therapeutic and makes for a more structured approach to the last moments of life based on your own preferences.

Cancer patients are thrust into this world of fear and anxiety about death and mortality from the first day of diagnosis, and it seems that bringing these issues out into the open is an important strategy for facing death on your own terms. It takes courage to do this. With our capacity for deep reflection and an awareness of the inevitability of death, human beings carry a unique burden of anxiety that no other species carries. Since the beginning of recorded history, people have feared death and reflected on our mortal condition. In fact, one of the oldest literary works in existence is called The Epic of Gilgamesh written around 2000 BCE, and death is a central theme in the story. It’s about an ancient Sumerian king who loses a close friend to death and tirelessly searches the world to find the secret to immortality. The king does not find what he was looking for, but he does find peace in his own mind to accept death and appreciate life despite our mortality. As the great theologian Paul Tillich said, “You don’t conquer the anxiety about dying, you meet it with courage.”

That we are here is a miracle. Whatever your ideology, it’s simply amazing that we became self-aware and dominated a tiny planet in the endless void of space. We yearn to hold on to this experience. Even if we lived 1000 years, we’d still yearn for more time. Embracing death is a difficult aspect of life that we all face, and it can be a process. Talk to your doctor and your loved ones about this process.

Esophageal cancer affect some 14,000 Americans each year. It is generally a deadly disease because its symptoms are so vague. Surgery for this cancer can be very debilitating and have a prolonged recovery. This video features a new surgical approach called “minimally invasive surgery”. Dr Scott Kelly, a gastrointestinal surgical oncologist at the R Lee Moffitt Cancer center in Tampa Florida, is featured on this video. His patient had successful surgery. This type of surgery is not for everyone, but in a properly selected patient, it can be associated with less pain and a quicker recovery.