The plan is for me to write a series of blogs about cancer. You will read this small paragraph every time you read one of these blogs because it is an explanation and a disclaimer. First of all, why should I do this and what qualifies me to do so? The answer to the second question is that I am a cancer immunologist with a PhD from the University of Pennsylvania and have 30-years experience in not only research, but also in the experiences of cancer patients. I have published numerous articles and a book about immunity to cancer and have two other books about my experiences with research and cancer patients as well as a fictional account of the final cure for the disease. However, none of this experience allows me to give advice or otherwise tell people what to do if they have cancer. I can be viewed as a participant/observer who will be relaying current and past observations about this world called “cancer”, which many people do not understand. That’s the answer to the first question, which is why I should do this. The first step in overcoming anything is to understand it first. With that being said, here they are:
Number 13 Families and Cancer
The consequences of cancer for the family
Cancer death and the family
A final focus will be on cancer and death. This is the last topic anyone wants to think about. The eminent loss of a loved one is something most people would rather not think about, but this is part of the cancer reality, it brings with it death. Cancer is a unique type of illness because it cannot only affect the person who has it, but also their family, those that care about them, and the healthcare system that is treating them. Most of this discussion about families and cancer has focused on how family units cope with a member who has been diagnosed, treated, or is recovering from cancer. One of the things about cancer death is that many times it can be accurately predicted. This is both a good thing and a bad thing at the same time. The good aspect of this “predicting the time of death” for a cancer patient is that they can plan ahead and maybe do things they always wanted to do or determine what they want to leave for their loved ones afterwards. The sometimes-bad aspect of this situation is that at some point, a decision must be made to either continue treatment or allow the patient to die. The question is: who gets to make this decision?
This aspect of cancer was discussed in detail in the Individual and Cancer section, but initially it’s the adult patient themselves or if a child, the parents that actually make this decision. For adults who no longer have the ability to make that decision this responsibility falls upon the family and the physician. For legal reasons the patient is often asked to sign a “do not resuscitate” (DNR) form that allows the family and the physician to decide at the appropriate time. These decisions as far as the family is concerned, is complicated by the fact that they are also caregivers and have emotional and moral issues to deal with in this situation. Many decisions such as this that are within a large nuclear family are usually decided by quorum with main input by the closes member to the patient. However, sometimes it’s just a single individual such as a spouse/partner, brother, or sister. Regardless of who is involved there is considerable psychological stress that has to be dealt with in situations such as these. Occasionally, there are conflicts between the physician and family about what to do either way and unfortunately the laws about this issue, despite the fact that they seem to be definitive, sometimes do not apply here. Often in these situations the care of the patient is transferred to another institution, which is an unfortunate consequence of a situation like this. It is clear that this issue of cancer death for families can be an exceptionally complex situation, but there is help for family members who have to cope with the subject.
The sociological “cost” of cancer and the family
Another area related to the consequences of cancer is cost. There are two aspects of cost that are important. The obvious one is financial because of the general cost of healthcare in the US. This affects families in various ways, which at first glance don’t appear to have anything to do with money. The second aspect of cost has to do with society. This is a very complex area that affects the family unit in multiple ways. It focuses on the individual with the disease, but the family is affected because of the relationship between the two. Just like the individual, families are an integral part of society, and this is why family members of cancer patients initiate many of the sociological changes related to cancer. Because of the “power” of the family voice in society, many changes within it occur rapidly and without much resistance. Therefore, this would be the logical place to start this discussion of the “cost” of cancer.
The individual and the family are indeed components of the larger society, but there are mini-societies within the larger one. For instance one could view an individuals family and friends as one of these mini-societies where, depending upon what that individual does, change occurs within the mini-society. This is an exact analogy of the larger society and how its parts can induce societal change. Obviously, as mentioned in the beginning of this discussion, the diagnosis of cancer affects this mini-society by realigning responsibilities, emotions, and opinions of its members. The people within this group often begin to not only talk amongst themselves concerning cancer, but to others in order to learn about cancer. They do this not only for themselves, but also for the patient. This type of learning experience begins with stories of other relatives who had gotten cancer and can expand to full fledged information-gathering efforts by family and friends. This is an important source of cancer support for the patient because of the simple fact that you tend to trust what your family and friends have to say. You often feel as though they have your best interest at heart. This is a direct result of the sociological change that resulted in the “silence” of cancer being lifted. Today we take this sort of thing for granted, but in the past this mini-society learning experience would never happen.
In any discussion of the consequences of cancer, particularly when it comes to the larger society, there comes into play the concept that was mentioned above called the “cost.” Again, there is the strictly monetary cost of healthcare related to cancer that impacts families and their decisions related to the care of a family member with cancer. Those will be discussed later, but there have been attempts to combine the monetary and the social cost of cancer. This is what is called the “psychosocial” cost of cancer and it is an attempt to put a monetary value upon the sociological aspects of cancer. Some of these are physician/nurse fees, cost of end-of-life care, treatment cost of psychological disorders caused by cancer, and the expenses incurred by family members involved with the patient (transportation, child care, and work loss). This list is extensive because many new things are going on within a family that has a member with cancer and they all cost money. In 1975 it was estimated that the social cost of cancer was about one tenth of the US Gross National Product or 138 billion dollars. The problem with studies such as this one is that the monetary cost of not only the areas mentioned above, but almost all of these social expenses incurred by the family are vague and range in value. In addition to this it is very difficult to assign a monetary value to a human life. The only redeeming quality of studies such as these is that they elucidate the enormity of the cancer problem faced by modern society.
The real social costs of cancer are the psychological effects that cancer has on family members and the resulting consequences on society as a whole. For instance while a family member is being treated for cancer changes occur within members of the family. These changes are related to the unpredictability of the treatments and the disease itself such as tension, irritability, and relationship dynamic changes between the members. This is very similar to what happens as outlined in the Individual and Cancer section where the person being treated suffers from a host of psychological effects caused by this uncertainty related to cancer treatment. One of these psychological effects suffered by individual cancer patients as mentioned in the above section, was Posttraumatic Stress Disorder (PTSD). These are symptoms such as anxiety, depression, and what is called “hyper arousal,” which is a heightened sensitivity to negative stimuli. As far as families are concerned, parents of childhood cancer survivors routinely experience PTSD years after the initial treatment of their child. It was found that it was not uncommon for a full 40 to 90% of both mothers and fathers to have experienced these symptoms at some point after the 5-year “cured” period. Psychological counseling has been found to be an effective treatment when these symptoms interfere with the normal functioning of the family. However in real-time, during a family member’s cancer treatment, immediate psychological symptoms within the family (partners/spouses, children, and friends) occur at an increasing rate. Some of the many symptoms include inability to concentrate and loss of confidence. Just these two psychological symptoms can lead to problems with safety in the household, while driving or at work. Often family members had a feeling of not being in control as well as feeling helpless to do anything to help this family member being treated for cancer.
Another psychosocial effect of cancer on families is cancer survival, which was mentioned above. Once a patient is deemed “cured” of their cancer the effects of the disease remain. This is true for not only adult cancer patients, but also children, which is the fastest growing cancer survivor group. One of the strongest disruptors of psychosocial environment of the family is the recurrence of cancer. This can occur at any time after the patient is been deemed cured, which as mentioned above, is usually after five years of being cancer-free. As discussed extensively in the Individual and Cancer section, the re-occurrence of cancer has a devastating effect on the patient, but more importantly family life is also changed dramatically. Just like with individuals who have a recurrence, family members begin to re-live the experiences they had throughout the “cancer experience.” This is more of a traumatic event for siblings of the patient. How old they were when the parent was treated for cancer determines how well they cope with the recurrence. If they were very young and didn’t understand it then, that confusion re-surfaces. Often what accompany those memories are other immature thoughts that are unrelated to the recurrence, but were going on during the initial experience of their parents having cancer. This can lead to behavioral problems. In addition, it has also been shown that the adult family members respond to the family member’s recurrence by demonstrating a more intense effort than was initially demonstrated during the initial cancer experience. However, with that comes more intense impairment in the functions mentioned above related to concentration and confidence.
The monetary “cost” of cancer and the family
When talking about the cost of cancer in strict monetary sense, the problem is enormous and can have a devastating effect on a family who’s loved one has cancer. A study conducted by the National Cancer Institute, which looked at just cancer patients that were 65 years or older determined that the cost of cancer for just this group would be almost 160 billion US dollars by the year 2020. According to the US Census Bureau in 2010 this group was 13% of the US population and by 2020 twenty percent (US Census Bureau 2010). If one includes the rest of the population it becomes apparent that cancer is one of the most medically expensive diseases in society. The financial aspect of cancer as it relates to the family (and friends) begins with the direct cost of cancer care. These cost are things like the cost of cancer drugs, rehabilitation, psychological counseling, and any expense directly related to patient care. Even with insurance these costs mount-up and can become a financial burden for even financially well-off patients. Eventually, the patient or the patient’s immediate family is unable to afford these expenditures and need help. Other family members and friends may contribute financially to the cost of this care. Many times after this extended family is unable to keep up, they organize fund raising events to offset the cost. The subject of “family fundraising” will be the topic of the next section, but the effect that this financial burden has on the family has other wide-ranging effects on society. For instance the expense of cancer in many cases leads families to alter their economic strategies in such a way as to affect other institutions such as banks. Many families either refinance or sell their homes in order to pay for cancer related expenses. Retirement funds have also been “cashed-in” for this very purpose. There are hidden cost of cancer that relate to simple things such as transportation cost, lodging for the family during hospital visits, food, and other expenses that are all associated with attending a family member with cancer. Hidden types of financial problems associated with visits become known to primary care nurses who interact with visiting family members and are sympathetic to their concerns. Situations like this one and the need to help family members with cancer has become an integral part of society. Cancer is a disease, but now also an industry. Families that wanted to help other families during the crisis of cancer initiated cancer fund raising that was never heard of until the 1990s.
Families and cancer fundraising
There are several very obvious changes in society as far as cancer is concerned. Most of these changes interface with the media in the form of print, TV, and radio. Two of the most prominent indicators of this change are advertisements for cancer treatment centers and cancer fundraising events. Cancer fund raising has become an industry much like cancer treatment centers. Each tends to elicit funds associated with cancer treatment. These organizations actively compete for patients and their healthcare money. As far as cancer fund raising is concerned the question is how did this all start and who is responsible? The answer to these two questions is simple to answer. The answer to the how part begins in the 1980s when the veil of silence about cancer was lifted. This silence about cancer that came from the 1950s was discussed in detail in an earlier section of this report. This silence basically prevented fund raising efforts because the subject of cancer was not talked about. At that time, cancer was ignored because many thought it affected a very small-unprivileged section of society. During the 1980’s it was recognized that cancer affected everyone and the disease was brought out into the light of society. Now the “who is responsible” part of this question mainly has to do with families. As cancer became more prevalent there were some quite famous and wealthy individuals who died because of it. One of the most recognized cases was the death of John Wayne the actor and celebrity. Using funds from his estate John Wayne’s family began to support the John Wayne Cancer Foundation, which supports cancer research and cancer facilities throughout the US. Even though this was the beginning of family-based cancer fund raising, that effort, even on this small scale has changed society.
Today some 30 years later, celebrities such as Fran Dresher are not only using their high visibility in society to raise funds for cancer, but are also warning people of the carcinogenic dangers of food additives. This is an example of a famous individual involved with cancer fund raising, but as far as family efforts are concerned several notable organizations devoted to cancer fund raising have appeared recently. The first and probably most visible is the Susan G. Koman Foundation. Susan G. Komen was a woman from Peoria, Illinois who died from breast cancer in 1980 at the age of 33. Her sister was determined to help other women diagnosed with the disease and created the non-profit organization in 1982. Since then the organization has raised over 1.9 billion for breast cancer research (Susan G. Komen). The next notable family-based cancer fund raising organization is Alex’s Lemonade Stand Foundation, which was started by Alexandra (Alex) Scott who was diagnosed with neuroblastoma and passed away from the disease in 2004 at the age of 8. Prior to her death, Alex decided to set-up a lemonade stand in the families front yard and give the proceeds to doctors to treat other children who suffered from childhood cancer. In 2005 this non-profit organization was founded by her family and has raised over 50 million for childhood cancer research.
These two examples of cancer fund raising, initiated by the family are the most visible, but there are literally hundreds of smaller fund raising organizations that have been initiated by the family of a cancer patient. Most of these fund raising efforts are genuine, but some are not. Unfortunately, some individuals and organizations abuse the fund raising system for personal gain, which cast doubt on legitimate efforts. Fortunately most of this abuse is detected and persons responsible for it have been prosecuted. To a certain extent cancer fund raising has become a lucrative business, which is susceptible to the types of fraud all successful businesses occasionally experience. Despite this, these efforts by family members has not only raised vast amounts of money for cancer research, but also has raised the awareness of the public to cancer. All of this has come about because the stigma of cancer, which was mentioned in the beginning of this section, began to dissipate. This allowed open discussions about cancer and then the willingness to help others, thorough family-based efforts, began in earnest. This area of fund raising for cancer is the most visible aspect of the change in society caused by the continual presence of cancer. It is the result of the power of the family, which is a hallmark of US society. Once an issue is addressed in the context of the “family” it becomes an issue that society as a whole must deal with. The contribution of the family to the recent changes in society with respect to cancer have been enormous and are a direct result of the power of the “family voice” in society.
