START PART TWO OF DIAGNOSIS
Sex and Significant Others
Role Of Family
Teach Your Children Well
We all bring our own set of coping and interpreting skills, or lack thereof, to the diagnosis. These may or may not mature and evolve in time. The oncologist needs to sort these out straightaway. Moreover, pre-existent psychological issues will come into play at this time and clinicians need to be exquisitely sensitive to this. These can become intensified in general or even “telescoped” and directed largely on their health care team. Although the experience of a cancer diagnosis may have permanent personality altering effects, it is silliness to expect all patients to instantly mature or evolve into an enormously effective coping style. People will do what they do, not what one may wish them to do. Furthermore, if patients are not being real and genuinely themselves when initially dealing with the disease, they may never be able to evolve into a more effective coping style . One can lose more than time running away from a diagnosis.
The losses patients feel are both real and perceived and even if not shattering they may be life altering. Issues such as whether there will be a loss of health and physical integrity, a loss of friends and loved ones through rejection, and an inability to perform the duties of daily living, hobbies, and self-care, will arise. The very important impacts on job and finances, self-esteem and the all too pervasive guilt of “what did I do to deserve this”, may come flooding at the patient. The loss of control can be overwhelming
Fundamental initial emotional reactions are actually quite reproducible and common in our culture. After decades of practice, I have observed that anxiety, rarely veiled as hostility and anger, leads the pack.
The oncologist may see sleep problems, compulsive behavior and inability to concentrate. Guilt and petulance may follow with “what could I have done or should have done”. An entitlement based demanding demeanor may rarely arise. Once again, the goal is to impart knowledge that can bring the patient towards informed and willing choices and compliance with what is known to be true. Teamwork is then possible.
There are two “D’s” worth mentioning which some patients may fall into; depression and dependency. I am not referring to the clinical diagnosis of major depression, although certainly cancer patients may experience this. I am referring to a reactive, transient depression. A newly diagnosed patient may experience blunted emotions, insomnia, and lack of appetite, withdrawal and literal slowing down. Depression can often be mistaken for dementia, thus establishing the diagnosis expertly is crucial.
Dependency can be particularly severe. Although it is uncommon, I have seen patients immobilized in advanced cases of dependency. This is as simple as it sounds. The patient surrenders all sense of autonomy and self initiated behavior with also handing over control of their life to someone else. This is typically some family member but I have had a few patients wish to pass it all to the savior in the white coat with MD after their name. As dependency and depression in this setting are both reactive phenomena, it is critical to know the patients temperament and level of functioning before the diagnosis. Treatment, including medications and talk therapy, can be extremely effective and most patients respond.
This is not to say that patients with unrealistic post diagnosis behaviors cannot respond as well without them. They can, but it poorly prepares the patient for the reality of making future decisions as well as encouraging a realistic aggressive approach to rehabilitation. Regain of physical as well as psychological and emotional strength when doing so will be the hallmark of return to normalcy.
Some physicians, usually unwittingly and often as a reflection of their own underlying personality, elicit and reward the dependency of patients. This is obviously not wise as no one’s shoulders are that broad or strong to carry the burdens of others cares in crisis. Less commonly, in my opinion, some oncologists are very passive about patients’ non-engagement and seeming willingness to go along with whatever is offered without question . As mentioned, this could be fear and undo or misplaced respect for the physician or echoing of their pre treatment personality. I have seen such individuals who were hiding and cowering under the tyranny of “what if, maybe, so what, who cares, if only I had…” also do quite well.
The personality, per se, of the patient is not deterministic of survival and oncologists are not in the business of personality diagnosis or changing, even if such changes were in their little black bag of wonders. Rather, the journey will elicit prior coping skills and they must be recognized and if problematic, they must be dealt with by the entire team as they do affect the treatment team on some level.
Positive interactions are more honest and revealing as silent suffering is often reduced. The notion of a positive outcome from a “pay it forward” attitude and seeking and finding joy in the teeth of suffering and despair is not hogwash or Hollywood pabulum. It does make a material difference on life’s quality. It can also be breathtakingly beautiful to be touched by patients who find this path.
Facing your mortality can either serve the team well or if not, sentence one inappropriately to some sort of hell that simply need not be. Fear and anxiety driven bad behaviors and ‘stinking thinking’ cannibalizes hope. Although past behaviors will not guarantee future responses, they are often a clue. Thus, physicians must welcome input and insight into how patients have handled prior stresses. Oncologists must also look for coexistent stresses and be especially attentive to the behavior of the patients’ loved ones.
Although possible, blind denial of the diagnosis, severity or probable prognosis by patient and family is rare. It is usually transient and recognizable early. Once again, information, sympathy and emotional engagement are highly effective ways one breaks through. More severe, disabling and dangerous denial is actually quite rare. Patients and families virtually always want to know what is happening and what may transpire. I have had only two patients severely injure themselves because of complete withdrawal from reality after diagnosis.
The exceptionally quiet patient can be vexing. This may be a manifestation of outright denial or stoicism. It will slowly kill the family. It may be depression, or rarely some manner of spiritual acceptance from the start. When it happens it requires either prior experience or carefully matched counselors to help manage when the line the patient straddles moves from seeming acceptance to acquiescence. I have seen this with not only treatable but curable diseases. It happens that the rare patient gives up even before they get in the starting blocks.
The patient is the one with the disease; not a well meaning loved one. It is rarely acceptable to fail to divulge to the patient all information because of questioning the patients’ ability to cope with the revelation of the diagnosis. In such rare cases, one must always seek professional and documented psychiatric opinion. Incompetent patients are rare and they are virtually the only situation where the rule of total confidentiality and total disclosure to the patient do not apply. Families may oppose complete revelation. I have seen that happen. However, the rule is sacred. Failure to obey it is a sure road to disaster and creates emotionally impotent patients and emotionally paralyzed loved ones.
Sex and Significant Others
Oncologists are often amazed that they need to stress that cancer is not contagious and sexual activities are helpful, not harmful. I have some great anecdotes of this. Patients and their lovers need intimate contact. Patients may feel they are no longer desirable and lovers may fear to cause harm. Physicians should address this basic and essential means of human expression and contact and encourage it. One must look to the healthy spouse for veiled depression and exhaustion through a misplaced sense of self-mortifying duty. The data on spouses of those diagnosed with cancer suffering strokes and heart attacks in the heat of the battle against their beloveds’ cancer is very clear; they are at high risk to fall ill themselves.
Spirituality is a very real issue and comes to the fore at the time of diagnosis. Spirituality, religion and theology are not synonymous. We humans are more than mere flesh. A soul can and does ache deeply as cancer burrows into our lives. Existential is not a fancy word one bandies about in sophomore college classes or self-help books. The diagnosis of cancer evokes thoughts, feelings, ideas, dreams, experiences, and aspirations that are crucial in shaping individual destiny and vital to the form, texture and flavor of a patients’ self-chosen style of existence and their personal stance. The experience of cancer is fundamentally on an existential level.
Doctors do not have to evangelize but they do have to inquire and find the appropriate level of assistance. Personal touch is also an important issue at the time of the diagnosis. All patients want some level from a mere handshake to an embrace or a good cry . All patients have their boundaries and it is wise for providers to seek them out and meet them there. Touch is not just physical but emotional, spiritual and intellectual. It may simply be the providers’ body language and words, but I implore physicians, touch your patient; it could well be you some day.
This is time to solidify faith and not question it. The answer to the question of your shaking faith is believe. You already know the why me question is not answerable. It is not a fair world and cancer is no respecter of persons. Disease is unimpressed for the most part by us, although maintaining your health helps enormously, but never enough. You came in alone you will leave alone but you are not alone now.
Hear me when I tell you faith can move mountains. It may be the healing of personal emotions and family emotions. I think believing in miracles is miraculous enough and I never go looking for them however I have seen the unexplainable twice in thirty years.
The one mountain top experience we must claim together with the patient is Mt Understanding. We are not in this alone to live on Mt Solitude where the torrent of tears flood down and fear erodes hope.
Read, Listen, Learn and reach out. Let this be a season where the weightiness of worry is diminished as we engage as a team.
The Role of the Family
Family conferences are wise as families usually wish to be involved. Oncologists must ally with them but the patient must always be the center of everything. Family leaders will evolve. It will be clear soon enough whom the family leaders are. However, knowledge of state laws regarding next of kin is essential.
When it becomes necessary, families can have an immense burden lifted by recognizing and understanding the fundamental right of patient autonomy. Families should learn that when asked to make serious decisions on behalf of the loved one who can no longer decide for themselves they are being asked to be the patient, not themselves in the patient’s shoes. This is so called substituted judgment.
When patients cannot speak for themselves or when family conflict arises there should be a spokesperson armed with a pencil and paper. A spokesperson can be a great help to avoid painful and time wasting repeated conversations. I do the following. I try to get a note taker assigned right from the start. Often this is the patient or their spouse. They decide. I encourage recordings but first prefer practicing the more active role of note taking. After the first meeting I generally ask the note taker to relay the gist, the big picture of what they heard. This can save a great deal of heartache and save the day. As a practical issue, patients and families’ need plenty of paper and encouragement to interrupt and ask questions. I often tell them they can bring a tape recorder if it would help them although I usually do not do that in families who will rely only on that and thus not as fully engage. It is a judgment call with the goal being everyone on the same page.
As is practicable, I try to schedule family conferences in advance. If families wish to record a conversation, I simply turn on my own pocket digital recorder for the obvious legal documentation reasons. It only takes a few seconds to download it onto a PC in a secure manner.
Patients need a realistic sense of control as soon as possible in the process of receiving the diagnosis. Thus, this is not a time for tap dancing around issues. Everyone must strive to reach a working, mutually understood grasp of the diagnosis and its implications. As with all active listening, everyone must check in with each other so that all are mutually clear. I have known clinicians (myself included) to leave a room, swelled with pride and comfort that they, the great communicator, had done a marvelous job. In some cases, that is far from true. It is not about fault. It is about everyone working hard to get the facts in the open, be clear on what they mean and how they relate in an understandable manner to the patient so the patient can make informed decisions.
Patients can be victims of some families and some patient’s care can suffer owing to satisfying the guilt or panic of such families. I have more than once facilitated the patient taking charge and telling such non-helpful members to “cut the crap”. Those are times to have a recorder running. Disagreements will come and this is not a contest. The goal is everyone being on the same team and the patient winning, especially as the definition of a win may change over time from cure to quality of life issues or smaller specific bucket list goals.
The common family conflicts are usually variations on a theme. A common example is the themes where one family member wants the patient left alone to “die with dignity” while others want to fight to the end. In such cases the mantra that the patient is the one with the disease has been left at the wayside. Family members might be more working out their own issues of redemption, salvation or resurrection of old hurts now again made acute by the present crisis and possible impending loss of second chance. Once again, the key is communication. Everyone must discuss all the reasonable options while making it clear that it is the patients’ final decision. Having reached a decision, everybody needs to get on board or get out of the boat. It really is as simple as that. It is imperative that patients state their wishes to clearly worded questions in the presence of the family while both the doctor and family, other than asking appropriate questions and assuring clarity, hold their tongue.
There should never be private conferences with individual family members or groups of family to the exclusion of others. Dogmatism is a another disaster waiting to happen. Physicians are neither God’s messenger nor the patients’ messiah. Another admonition is that patients and doctors can be sure that engaging in historical criticisms of past providers will not rewrite history and may incite hysteria. It is far wiser for oncologists to reassure about past care and when unsure, simply say nothing and urge a focus on the present.
The difficult family is another breed entirely. There are usually private agendas riddled with guilt and fear that will color all interactions. There is the translator from hell phenomenon where what the oncologist clearly means is not getting across. There are occasionally family members that are inappropriately demanding of time to suit their convenience. They may also be individuals whose overpowering fear or need to control simply prevents them from assuming the role of student who without bias accurately would otherwise transmit and not translates information.
Disease is not convenient and does not keep a punch clock; clinicians will have to help such individuals face that. Doctors must also look out for those family members who flatter inappropriately and criticize former physicians. This is invariably an alligator pit. Typically, such folks will in time demand excessive consultations and question every treatment method. Once limits are set, clinicians sadly must be ready for accusations of insensitivity to outright litigation. Thus, it is wise to invest a reasonable amount of time in the beginning to build and buttress a bridge for the enormously difficult canyon cancer patients and their families must cross.
END PART TWO
Teach Your Children Well
It is my opinion that families should keep the younger members of the family informed. Families usually have a realistic idea, on an objective level, of what each child can comprehend. The error, if made, tends to be in assuming what the child should comprehend. Remember, children may fantasize that they caused the illness, especially if kept away. In addition, children are not stupid. They know something is wrong and game playing is often transparent and misunderstood. It can potentially teach a very wrong lesson regarding how to face difficult times and the reality of pain and suffering in an unfair world. Emotional instability of the children may manifest as regressive behavior that ranges from infantile to greater dependency to even lack of toilet training. Most importantly, it is a dangerous thing to leave the child ill equipped to handle the trauma as well as kept away from a loved one that may be dying. This does not help the child and it damages both them and those who are suffering. Frequent hospital visits are important for both the child and the patient. If needed, the oncologist can assist the family with getting professional help for the children