CANCER AND THE …

CANCER AND THE WORKPLACE

SHOULD YOU TELL?

 

 

Deciding whether to tell — and who to tell about your cancer diagnosis— is an intensely personal decision each of us must make for ourselves. Some might consider it essential to disclose their diagnosis because they hold managerial positions or run their own business. Others consider that a reason not to tell; privacy and protection may be of the utmost concern. In either circumstance, your employer, co-workers and/or employees all depend on you not just to be there, but also to be there. They rely on the contributions you have made over time and the energy and passion you bring to the team. Your work is essential to overall productivity.

In some cases, however, the cancer and the treatment can cause side effects, like fatigue, “chemo brain” and discomfort. This may challenge productivity levels, making performing your essential job duties more difficult. Changes in productivity levels, appearance and/or any extended absences may give people reason for concern and may also cause you to consider if any job modifications or adjustments can be made to your work so that you may be a more comfortable, productive and effective employee.

Job modifications are different for everyone depending upon a number of things; your needs, your type of job environment and your job roles. These modifications are sometimes referred to as reasonable accommodations. A reasonable accommodation under Title I of the Americans with Disabilities Act (ADA) is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Some types of accommodations may include telecommuting, flexing your days, a different position or technological aids.

Here’s where the law may tip your decision on disclosure. The caveat is, in order to request a reasonable accommodation or medical leave, you must disclose a medical condition.

WHO TO TELL

Your boss? Your coworkers? Human resources? The answer depends on you and your experience in your work environment. First, determine who really needs to know and start by talking to those people who make you feel most comfortable. If you’re completely in doubt, start with HR and let their experience help guide and support you through the “telling” process.

 Your Boss

Telling your boss can be uncomfortable, but it can actually protect you in the long run. Studies show that an alarming one-in-four cancer survivors say they were confronted with some type of discriminatory behavior in the workplace. If you find yourself in that position, remember that the Americans with Disabilities Act only protects you if you’ve made your employer aware of your disease. In other words, what your boss doesn’t know could wind up hurting you.

Then again, you might be pleasantly surprised at the reactions you get. As many of us have discovered, our bosses can turn out to be far more than just supervisors. They can be sources of strength, hope and encouragement, far outside the professional realm. Joanne W. found immediate relief and support when she disclosed her news to her immediate supervisor: “My supervisor’s reaction was warm and loving. She gave me a hug and cried with me. Then she told me that she would ‘take care of everything’.”

Management and/or Human Resources

Your boss may not be the only member of management who needs to know — especially if you’re part of the management team. Once you disclose your diagnosis to your boss, he/she has the right to share the information with human resources and any supervisors or managers who will be affected. If you have good relationships with those managers, you might find it in your best interest to tell them yourself.

You should also talk to your Human Resources department. They will have considerable information about your company’s policies and experience with cancer survivors and may have valuable advice on how to tell people and what to expect.

Your Co-Workers

What about your co-workers? Should you tell them? If so, who? It’s impossible to provide guidelines that apply to everyone. The answer lies in your company’s corporate culture as well as in the relationships you share with your co-workers.

Assessing the Corporate Culture

You’re going to need to make an assessment of your company’s corporate culture and how you fit into the scheme of things. Ask yourself the following:

• What is the general attitude of the employees? Are we more like a family or strictly business?
• What are the differences in the types of relationships I have with different employees?
• Who do I consider a good friend, both inside and outside the office?
• Who do I feel I can trust with matters both personal and professional?
• Has there been another instance of someone with cancer, and how was it treated?
• How do people generally react to the news of a co-worker’s illness? With resentment for having to ‘take up the slack’ or by rallying to support their team member?

Analyzing these aspects will help you predict how your news will be received and help you decide who to tell — and how. When we say ‘ trust your instincts,’ it’s not a cop-out for lack of better advice; you know your work environment better than anyone.

When Bigger is Not Always Better

While there are exceptions to the rule, larger corporate environments can often be rather impersonal. You may not even know all the other employees and may take comfort in a certain degree of anonymity. And if you’re in a high-stress, highly competitive position, you might feel very strongly about not letting co-workers know. Remember, that’s your choice too.

If you work for a smaller company — or a tight knit department in a larger one — there may be a more family-like, nurturing atmosphere. You may spend as much time with your co-workers as your family and find it inconceivable to get through this experience without sharing the news. Let the individual relationships you have with the men and women around you dictate who you tell.

HOW TO TELL

You’ve decided whom. You think you know what. Now comes what some of us consider the most difficult part — how do you tell people about your diagnosis?

Prepare for Misconceptions

If you’re apprehensive about telling your co-workers, it’s not unwarranted. Despite all of the advancements and innovations in cancer treatment today, there are still many common misconceptions about what a cancer diagnosis means. It’s important to be aware of these myths before you start spreading the word so you know how to react. The most common are:

• Cancer is an automatic death sentence
• Cancer is contagious
• Cancer means you will have to stop working
• Cancer automatically makes you less productive, less competent or less reliable

Prepare Yourself

First, know that it’s perfectly understandable to be nervous. This isn’t easy information to share with anyone. No matter how close you are with your supervisor or co-workers, there’s simply no sure-fire way to tell how they’ll react. But they will look to you for clues; if you’re open about it, they’re less likely to shy away from the topic.

Prepare yourself for a wide range of responses. Remember that your own reactions to your diagnosis were varied, and if you didn’t know how to react, chances are the people around you won’t know either. Many will need a little time to get used to the idea. Acknowledging possible responses can help make facing those moments easier.

Try making a list of possible reactions — both those you’d like to avoid and those you’d most like to see. Some examples include:

• Fear
• Discomfort
• Confusion
• Pity
• Anger
• Avoidance
• Support
• Love
• Understanding
• Sympathy

Other tips on how to tell your co-workers:

• If you’re telling just one or two colleagues, create a comfortable, private environment in which to tell them.
• Reveal only as much as you want to in a straightforward manner. People will take their cues from how you present yourself.
• Give them a chance to ask some questions, if you’re comfortable enough. As you know only too well, some people have no experience with cancer and don’t know what you’re facing.
• Explain to your confidants what to expect in terms of future absences, and let them know there may be times when your mood and productivity will be affected. Don’t be afraid to ask if you can rely on them for help. It’s better to let them prepare for handling a few of your duties beforehand than to spring it on them at the last minute.
• Consider letting people know if you expect your appearance to change in terms of hair loss, skin and weight changes. Explain to them that it’s part of the process of getting better — you may even throw in a joke about how you needed a makeover anyway.
• Most importantly, reassure your co-workers that you’re not disappearing on them. You’ll still be in the loop with their assistance and you’re still an integral part of the team.

Ask for What You Need…and What You Want

Both supervisors and co-workers will most likely appreciate your frankness about your cancer in terms of being a team player and preparing them for changes. Taking the plunge and sharing the news, however, doesn’t mean you’ve given up your right to privacy and control.

Even the most well meaning co-workers can seem cumbersome at times, particularly when your energy is taxed. The last thing you want is a parade of colleagues streaming by your desk each day, asking you for updates. You shared what you wanted and you can draw the line. This is sometimes referred to as setting limits or boundaries with people. Give yourself permission to say no in a professional, tactful manner.

Often, people may have certain expectations about how you should be reacting to your cancer. When you don’t follow those expectations, it sometimes feeds their need to offer their own advice, direction and help.. This is why it is so important to communicate to co-workers your changing needs as you move through your cancer experience.

Prepare for Mixed Reactions

You may be surprised at the reactions you get — both good and bad. Situations like this can bring out the worst in people, but they can also bring out the best in people you would never have expected to count on for assistance. You may, in fact, find that telling people is an amazing relief and a tremendous source of support — and none of us can ever get enough of that. Chances are, you’ll be surprised at how people step up to the plate and pitch in to help you out.

WHAT TO TELL

The Facts

If you want to keep the information you share to a minimum, consider disclosing the following:

• Your exact diagnosis
• An explanation, in layman’s terms, of what your diagnosis means
• Prognosis
• Expected course of treatment
• Expected leave of absences or sick days, if any
• The names of your physicians and specialists

Prepare ahead of time, to review the information. Don’t be alarmed if your employer requests documentation of your diagnosis (in fact, it’s wise to provide your boss with written details about your condition beforehand). It’s not a matter of mistrust — it’s a matter of paperwork and protection on the employer’s end. Plus, if they ask, you’re legally required to do so, and if you’re planning to return to the company, cooperation will be remembered.

Your Game Plan

Some  recommend strongly that newly diagnosed employees not only come forth with the facts about their cancer, but also come prepared with a plan for handling work: First, tell the supervisor and come up with a game plan, and then go to fellow co-workers. By having a game plan, the employee maintains a certain feeling of control over the situation. Presenting a plan at the same time as you deliver your news reminds colleagues and supervisors alike of your commitment to your job and your company. Not only are you reinforcing your position as a proactive and solutions-oriented member of the team, but you are also saying, underneath it all: Don’t worry. I will be back. I will survive this and my job won’t suffer. The following tips may be helpful in developing your plan:

• Be up front and honest about your diagnosis and what you expect to happen.
• Develop a buddy system where each critical project or responsibility is shared by a fellow employee so that if you’re out ill, someone is there to follow up.
• Try to share your tasks with a few different employees so that you are surrounded by a “support group” and no single employee is overburdened.

Your Feelings

If your co-workers and supervisors are friends, you may want to share with them what’s happening and how you feel about it. Once people know how you feel, they may have a better sense of how they should feel. Consider sharing the following:

• Your current mindset
• Your fears
• Your hopes
• Your vulnerabilities

KEEPING OPEN COMMUNICATION

Regular communication will help prevent your co-workers and supervisors from questioning your value and productivity as a staff member. Everyone will need reassurance that you’re still part of the team. A lack of communication can result in confusion and anxiety – or even mistrust and suspicion – whereas clear and constant communication can offer a world of reassurance.

• Communicate with supervisors and co-workers about how you intend to hold up your end of things.
• Initiate regular meetings with supervisors – and colleagues, if appropriate – to review expectations and productivity.
• Inform supervisors and co-workers if there is any change in your condition or treatment that will affect your performance.
• If you need help, ask. It doesn’t convey weakness – it shows you’re invested in ensuring the best outcome for any given project.

Cancer Pain – Don’t Suffer in Silence

Overview of Cancer Pain

Pain is the result of a physiological series of electrical and chemical events that occur in the body. The International Association for the Study of Pain defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.”

Pain receptors are bare nerve endings that are widely distributed throughout the body in the skin and mucous membranes. When pain receptors are triggered by mechanical, chemical, or thermal stimuli, the pain signal is transmitted through the nerves to the spinal cord and then to the brain.

Pain depends on many factors such as the type of cancer the stage of the disease, and the patient’s tolerance. Cancer pain can result from the following:

 

• Blocked blood vessels causing poor circulation
• Bone fracture from metastasis
• Infection
• Inflammation
• Psychological or emotional problems
• Side effects from cancer treatments such as chemotherapy and radiation
• Tumor exerting pressure on a nerve

 

Initially, pain may produce physiological signs such as grimacing, rapid heart rate, sweating, and rapid breathing. Patients with pain lasting more than 3 months (chronic pain) often do not display physiological signs and as a result, chronic pain often is undertreated. Communication between the patient and physician is important to ensure adequate pain relief.

When possible, if cancer pain is caused by a tumor, removing or reducing the tumor that is causing it may help. When the tumor cannot be removed, the pain may be treated in other ways.

Incidence & Prevalence of Cancer Pain

Studies have shown that 90% of patients with advanced cancer experience severe pain and pain occurs in 30% of all cancer patients, regardless of the stage of the disease. As many as 50% of patients may be undertreated for cancer pain, yet not all cancer patients experience pain. Pain usually increases as cancer progresses.

The most common cancer pain is from tumors that metastasize to the bone. Sixty to eighty percent of cancer patients with metastasis experience pain. The second most common cancer pain is caused by tumors infiltrating the nerve. Tumors near neural structures may cause the most severe pain. The third most common pain associated with cancer occurs as a result ofchemotherapy, radiation, or surgery.

Cancer pain may occur in different parts of the body. In one study, more than 80% of patients experienced pain in two distinct areas, and more than 30% experienced pain in three or more distinct areas.

Chronic Cancer Pain

 Effectively treating chronic pain poses a great challenge for physicians. Pain from cancer often affects a person’s life in many ways. It can change someone’s personality, ability to function, and quality of life.

 According to the  American Cancer Society, chronic cancer pain may involve persistent pain and breakthrough pain. Persistent pain is continuous and may last all day. Breakthrough pain is a brief flare-up of severe pain that occurs even while the patient is regularly taking pain medication. It usually comes on quickly and may last from a few minutes to an hour. Many patients experience a number of episodes of breakthrough pain each day.

Breakthrough cancer pain can result from the cancer or cancer treatment, or it may occur during a certain activity (e.g., walking, dressing, coughing). It also can occur unexpectedly, without a preceding incident or clear cause. Breakthrough pain is usually treated with strong, short-acting pain medications that work faster than persistent pain medications.

 Regardless of the type of pain you may be experiencing due to cancer, it is important to discuss it with your specialists and be persistent.  If you feel like your physicians aren’t taking your pain seriously enough, you may need to elicit help from family members and schedule a conference with your primary caregiver and your doctors to convey your level of pain.  Remember that it is not okay to suffer in silence.  Ask for help when you need it.  You will feel better and your family will rest easier knowing that their loved one is getting some relief from their pain.

 

Marriage and Chronic Illness: Being Sick Affects More Than Just the Patient

For my Husband, Brian, who tirelessly supports and cares for me. Thank you for all that you do and for all that you endure.  I love you.

Chronic is a word that I have grown to hate over the past year but have had to accept it as a part of my daily life. Unfortunately, I’m not the only person who has had to accept and deal with the effects of my chronic illness. My husband is particularly impacted by the daily ramifications of living with me while I am chronically ill. 

It’s easy for chronically ill patients to only think about what they are going through and how hard the illness is on them. After all, they are the ones who are suffering. However, we must remember that when we are sick, our families have to deal with the emotional baggage that we carry in addition to picking up the extra physical load that we’re not able to carry.

Affects on Marriage

The divorce rate among the chronically ill is about 75% so obviously the struggle is very real in families dealing with chronic illness. Approximately one out of every two people is dealing with a chronic illness either directly or indirectly. Being a caregiver to someone who is sick all of the time is a huge responsibility and can be a massive burden regardless of how much you love the person.

I have cancer so my husband and I have really had to learn how to work together as a team and to make our marriage work. I think because I am sick, I have unrealistic expectations for how I believe my husband, Brian, should be acting at any given moment.   I fail miserably in this respect.  He understood going into the marriage that our vows “in sickness and in health” for us would be more sickness than health.  I don’t think that I really understood what our vows meant.

The spouse of someone who is chronically ill may always feel as though they have to be “on” and that they can never afford to get sick or get tired. In my case, certainly, there is a lot of extra stress on Brian and he realizes that even if he doesn’t feel well, I probably feel worse and my needs typically have to come first.

If you were formerly an active couple tat enjoyed going out on the town and always having a good time, chronic illness will change that lifestyle quickly. This can be an adjustment for the caregiver/spouse when the ill patient has to back out of planned events and their social lifecomes to a screeching halt.

Definitely, mood swings can be a large part of dealing with chronic illness. Imagine someone who is sick 24-hours a day, seven days a week, in pain and can’t function, work or do anything productive. Imagine how that must be emotionally devastating and frustrating for the patient. The spouse of someone who is chronically ill will never know from day to day, minute to minute what mood their spouse will be in. What the ill patient might find amusing one minute might anger them the next. 

A healthy marriage probably sounds hopeless, but it’s not! A chronically ill patient can still have a happy marriage if she just remembers a few important tips.

Communicate. Communication is the most important key in making any relationship work, whether a chronic illness is involved or not. The patient needs to remember that it is not just them involved with the chronic illness and that they need to have understanding towards their spouse. We desperately want our spouses to understand what it is like daily living with a chronic illness. The fact is the spouse can never truly know what it’s like and they can never fully understand unless they are in the same situation.

The spouse needs to be willing to just listen when the patient wants to talk. Husbands typically are “fixers” and they just want to solve the situation but with chronic illness, that’s not going to happen. The patient often just wants someone that they can vent to and who will listen to them. We don’t want advice, we don’t want pity and we don’t want a motivational speech – we just want our spouse to listen.

Don’t be too hard on your spouse. If your spouse has to take care of the house, the laundry, the cooking and the children, don’t be too hard on them if they do not do the job as perfect as you would if you were able. It will be so easy for the resentment to build up and you may find that your spouse will refuse to do anything at all if you don’t show appreciation for what they are trying to help you with. You have to learn to let go of the control and let them help the best way they know how. Thank your spouse often for all that they do and make them feel special and loved because they are doing their best to help.

Meet with the doctor together. I think it is important for the patient and their spouse to attend some doctor’s appointments together. The spouse can relay things to the doctor that the patient themselves might not notice as a problem. It is also a good education for the spouse and a chance for them to learn about your chronic illness. If your spouse expresses a concern about mood swings or depression issues that the patient may not recognize themselves, the door is now open for possible treatments to help combat these issues.

Counseling. If the patient or spouse feels that as a couple they are not doing well dealing with the chronic illness, professional counseling or going to your church for counseling are great options. In counseling, the married couple will each have a chance to express their feelings, vent and are given exercises in how to work together.

Most importantly, love each other and don’t give up. Remember why you fell in love and know that person is still in there underneath the illness.  Make time for each other to just be alone and enjoy each other’s company.

Doctor-Patient Communication: A Critical Component of Patient Care

The manner in which a physician communicates information to a patient is as important as the information being communicated. Patients who understand their doctors are more likely to acknowledge health problems, understand their treatment options, modify their behavior accordingly, and follow their medication schedules. In fact, research has shown that effective patient-physician communication can improve a patient’s health as quantifiably as many drugs—perhaps providing a partial explanation for the powerful placebo effect seen in clinical trials.

Decades ago, physicians were presumed to hone their “soft” communication skills at patients’ bedsides, in their rounds as residents, and as students at the elbows of master clinicians. Today, the communication and interpersonal skills of the physician-in-training are no longer viewed as immutable personal styles that emerge during residency, but, instead, as a set of measurable and modifiable behaviors that can evolve.

 Medical professionals debate the best strategies for effective communication, as well as the ability of these strategies to be taught or evaluated objectively. Certainly, each physician must develop his or her own style of communication. At the same time, many professional and academic organizations now also have defined key elements of communications skills needed by physicians. For example, it has been recommended that physicians become competent in five key communication skills:

(1)               listening effectively;

(2)               eliciting information using effective questioning skills;

(3)               providing information using effective explanatory skills;

(4)               counseling and educating patients; and

(5)               making informed decisions based on patient information and preference.

Although these and similar lists of recommended patient-physician communication strategies are valid and useful, these tips are frequently found only in academic or specialty journals.

I hope that the following list will remind my colleagues that they are more than a passive conduit of medical information for their patients; they are interpreters and shapers of their patients’ health and full partners in their patient’s long-term health status.

1. Assess What the Patient Already Knows

Before providing information, find out what a patient already knows about his or her condition. Many times, other physicians or health care providers already have communicated information to the patient, which can have the effect of coloring patient perceptions and perhaps even causing confusion when new information is introduced. For instance, a nephrologist may talk about the patient “getting better” based on improving renal function tests, while a cardiologist is focused on the patient’s severe, irreversible cardiomyopathy. In this scenario, the patient may not fully realize the seriousness of the cardiologist’s findings because the nephrologist has told her that she “is getting better.” In other scenarios, patients will come to the physician with preconceived notions about a particular condition, perhaps based on less-than-authoritative sources. It is important, therefore, to determine what a patient already understands—or misunderstands—at the outset.

2. Assess What the Patient Wants to Know

Not all patients with the same diagnosis want the same level of detail in the information offered about their condition or treatment. Studies have categorized patients on a continuum of information-seeking behavior, from those who want very little information to those who want every detail the physician can offer. Thus, physicians should assess whether the patient desires, or will be able to comprehend, additional information. For the physician without advance knowledge of the patient, this level of need will emerge by degrees as the discussion unfolds and as the physician attempts to synthesize and present information in a clear and understandable manner.

 As when obtaining informed consent, a standard first step in presenting information to a patient would be to describe the risks and benefits of the procedure and then to simply allow the patient to decide how much additional information he or she wants. However, this step may require direct questions, strategic silences, and frequent verification that the information is actually being comprehended.

One telling sign of whether the patient is understanding the information is the nature of the questions patients ask; if questions reflect comprehension of the information just presented, a further level of detail may be warranted. If questions reflect confusion, it is advisable that the physician return to basic information. If the patient has no questions or is obviously uncomfortable, this is a good opportunity for the physician to stop the discussion, ask explicitly how much information the patient desires, and adjust accordingly. Continuing to provide further information is not always the best approach.

3. Be Empathic

 Empathy is a basic skill physicians should develop to help them recognize indirectly expressed emotions of their patients. Once recognized, these emotions need to be acknowledged and further explored during the patient-physician encounter. Further, physicians should not ignore or minimize patients’ feelings with a redirected line of inquiry relentlessly focused on “real” symptoms. Remember that your patients are people, and the consequences for them are more than clinical results. Patient satisfaction is likely to be enhanced by physicians who acknowledge patients’ expressed emotions. Physicians who do this are less likely to be viewed as uncaring by their patients. ANECDOTE.

 4. Slow Down

 Physicians who provide information in a slow and deliberate fashion allow the time needed for patients to comprehend the new information. Other techniques physicians can use to allow time include pausing frequently and reinforcing silence with appropriate body language. A slow delivery with appropriate pauses also gives the listener time to formulate questions, which the physician can then use to provide further bits of targeted information. Thus, a dialogue punctuated with pauses leads to deeper comprehension on both sides.

 One study found that physicians typically wait only 23 seconds after a patient begins describing his chief complain before interrupting and redirecting the discussion. Such premature redirection can lead to late-arising concerns and missed opportunities to gather important data.

As a side note, patient satisfaction is also greater when the length of the office visit matches his or her pre-visit expectation.  In situations involving the delivery of bad news, the technique of simply stating the news and pausing can be particularly helpful in ensuring that the patient and patient’s family fully receive and understand the information. Allowing this time for silence, tears, and questions can be essential.  Currently being on the other side of the doctor-patient relationship, I can tell you firsthand how much my wellbeing is improved when the physician takes the time to listen and thoughtfully answers my questions.

 5. Keep it Simple

 Physicians should avoid engaging in long monologues in front of the patient. A more successful strategy for the physician is to keep to short statements and clear, simple explanations. Those who tailor information to the patient’s desired level of information will improve comprehension and limit emotional distress. Again, physicians should be sure to ask whether patients have any questions so that understanding can be checked and dialogue promoted. It is wise for the physician to avoid the use of jargon whenever possible, particularly with elderly patients.

 An important fact for physicians to keep in mind:  between 20% and 40% of U.S. citizens between 60 and 80 years of age have not attained a high school diploma. In patients of all ages, a physician cannot assume the understanding of treatment risks that are described with percentages or numbers. Such “low numeracy skills” of patients require that physicians take special care in outlining the relative risks of diagnostic procedures and treatments. The bottom line is that we need our patients to understand what we are telling them, so we need to be as clear and keep it as simple as possible.

 6. Tell the Truth

It is important to be truthful. In addition, it is important that physicians not minimize the impact of what they are saying. For example, euphemisms may soften the delivery of sad information but can be extremely misleading and create confusion.

In my case, one of the initial doctors with whom I was working and whom I had known for many years, refused to return my phone calls and when he finally did, he told me to “remember my training” instead of committing to a diagnosis either way.  This left me confused and certainly frustrated.  Sure, I agree that my situation is complex, but his lack of communication was scary and unprofessional. Needless-to-say, we are not working together today.

Saying that a patient has “gone” or has “left us,” for example, could be interpreted by an anxious family member as meaning that the patient has left his room to have a radiologic film taken or to undergo a test. Alternatively, physicians who use “D” words (e.g., dying, died, dead), when appropriate, effectively communicate the circumstance and minimize confusion. Yes, physicians perform a delicate dance, but as long as they demonstrate compassion while striving for clarity, everyone in the doctor-patient relationship will be well-served.

 7. Be Hopeful

Although the need for truth-telling remains primary, the therapeutic value of conveying hope in situations that may appear hopeless should not be underestimated. Particularly in the context of terminal illness and end-of-life care, hope should not be discouraged.

In my experience, I have not been given any “pep-talks” or had any discussions about hope.  Perhaps that is because my situation is dire, but still, we cannot rule out what hope can do for our overall well being and our state of mind.  My husband often reminds me that “Hope is a thing with feathers.”   If it were not for him, I would have given up a long time ago.  Certainly my physicians have not at all been my cheerleaders.  

In situations such as the imminent death of a patient, hope can be conveyed to the family by assuring them that therapy can be effective in allaying pain and discomfort. Thus, even when physicians must convey a grim prognosis to a patient or must discuss the same with family members, being able to promise comfort and minimal suffering has real value.

 8. Watch the Patient’s (and Your Own) Body and Face

Much of what is conveyed between a physician and patient in a clinical encounter occurs through nonverbal communication.

For both physician and patient, images of body language and facial expressions will likely be remembered longer after the encounter than any memory of spoken words.

It is also important to recognize that the patient-physician encounter involves a two-way exchange of nonverbal information. Patients’ facial expressions are often good indicators of sadness, worry, or anxiety. The physician who responds with appropriate concern to these nonverbal cues will likely impact the patient’s illness to a greater degree than the physician wanting to strictly convey factual information. At the very least, the attentive physician will have a more satisfied patient.

Conversely, the physician’s body language and facial expression also speak volumes to the patient. The physician who hurriedly enters the examination room several minutes late, takes furious notes, and turns away while the patient is talking, almost certainly conveys impatience and minimal interest in the patient. Over several such encounters, the patient may interpret such nonverbal behavior as a message that his or her visit is unimportant, despite any spoken assurances to the contrary. Thus, it is imperative that the physician be aware of his or her own implicit messages, as well as recognizing the nonverbal cues of the patient.

9. Be Prepared for a Reaction

 Patients vary, not only in their willingness and ability to absorb information, but in their reactions to physician communications. Most physicians quickly develop a sense for the various coping styles of patients, a range of human reactions that has been categorized in several specific clinical settings.

For instance, a certain percentage of individuals will meet almost any bad medical news in a non-emotional, stoic manner. The physician, however, should not interpret this non-reaction as a lack of patient concern or worry. In some cases, these same individuals go on to exhibit distress by other means (e.g., an increased reporting of physical symptoms, additional nonverbal communication of pain, or other behaviors aimed at gaining the attention of the treatment team). The patient might also simply be in shock and may be having a difficult time absorbing the distressing information. 

At the other end of the emotional spectrum, the sizable proportion of patients with mild or diagnosable depression and/or anxiety will likely react to bad news with frank displays of crying, denial, or anger.

A small percentage of patients who have difficulty forming a trusting relationship with a physician may react to bad news with distrust, anger, and blame. For such patients, establishing a lasting bond of trust with their physicians can be extremely difficult, and although all attempts to communicate should be made, unsettled feelings on both sides are to be expected.

In responding to any of these patient reactions, it is important to be prepared. The first step is for the physician to recognize the response, allowing sufficient time for a full display of emotions. Most importantly, the physician simply needs to listen quietly and attentively to what the patient or family is saying. Sometimes the physician can encourage patients to express emotion, perhaps even asking them to describe their feelings. The physician’s body language can be crucial in conveying empathic concern in these encounters.

The patient-physician dialogue is not finished after discussing the diagnosis, tests, and treatments. For the patient, this is just a beginning; the news is sinking in. The physician should anticipate a shift in the patient’s sense of self, which should be handled as an important part of the encounter—not as an unpleasant plot twist to a physician’s preferred story line.

 CONCLUSION

Simple choices in words, information depth, speech patterns, body position, and facial expression can greatly affect the quality of one-to-one communication between the patient and physician. To a large degree, these are conscious choices that can be learned and customized by the physician to fit particular patients in clinical situations. Avoiding communication pitfalls and sharpening basic communication skills can help strengthen the patient-physician bond that many patients and physicians believe is lacking.

 

From Diagnosis to Death: A Doctor’s Perspective

After my first two blog posts, I was inundated with questions regarding how I would change the way I interact with my cancer patients if I return to work.  I’ve tried to chronicle my experiences – from diagnosis to dying – in hopes that you will learn how you can interact with your patients more effectively.

Diagnosis

There was an undeniable shock that disrupted all of the carefully-constructed systems and routines with which I moved from day to day. For example, even the mindless greetings that I received from friends and colleagues after my cancer had been diagnosed had changed. How does someone with the recent diagnosis of cancer answer the question, “Hi! How are you?” The most accurate answer is, “Not so good. I have cancer.”

The shock of the diagnosis introduced chaos into my daily routines that I had carefully crafted to maximize efficiency in performing everyday tasks. Now my whole life revolved around being sick; it was hard to put structure to my day when I didn’t know how I was going to feel moment to moment. How should I rearrange my incredibly busy life to continue to move forward, even if at reduced speed? What, if anything, should I eliminate? Eliminating an important activity felt tantamount to giving up, but I tried to carry on despite (and at times denying) my disease. The response to changes in my routine spilled over into my personal life, affecting the inevitable reconfiguration of relationships with loved ones and friends.

Dying

A couple of friends thought that it must be comforting to be an oncologist when struck with cancer, because I could better understand my disease and its treatment than most cancer patients. However, the opposite is true: having actively cared for patients dying of cancer brought to mind vivid images of physical and social involution, the inevitable melting away of body mass, disability, pain, and morbid deathbed scenes. I am haunted by the visions of patients who have died on my inpatient service before I received my diagnosis.

I recall waiting for my first dose of chemotherapy, sure that it would kill me because of the awful side effects of the drug that I had observed during my practice. While some think of chemotherapy as a powerful healing antibiotic, I can only think of it as a poison.

Percentages also proved difficult for me. As oncologists, we routinely give our patients success percentages as part of a prognosis; often these percentages are “X to Y percent of success,” with “X” being the low number and “Y” being the top end. In order to maintain hope, our patients naturally focus—if not fixate—on the top number; as a clinician, however, I know that those two numbers are the outliers and the majority of the cases actually occur somewhere closer to the median. When given a spectrum of percentage for my prognosis, inevitably my experience causes me to run the numbers in my head and to realize that my chances are much lower than that higher, hopeful number.

Discomfort

The discomforts I fear the most are physical pain. I know that pain is controllable for most patients with cancer, and as a physician I know that I had greater access to pain medications than do most patients. Yet I suffer from pain during my cancer treatment and continue to fear the possibility that increased pain would accompany the recurrence and advancement of my disease.  Pain is a double-edged sword; I would happily get rid of the pain by taking pain meds; I hesitate to do that, however, because I fear losing the pain as an indicator that my disease may be progressing.

Disability

At the time my cancer was diagnosed, I ran on a regular basis. By the time of my first round of chemotherapy, my quality of life was substantially worse than when my cancer was first diagnosed. In fact, myopathy (weakening of muscles) had already developed.  In addition, because ataxia (loss of coordination) and neuropathy (abnormal nerve function caused by the chemotherapy) also have set in, my life was radically different within just a few months.

Drug and other Treatment Effects

I suffered through adverse effects of treatment (including nausea, vomiting, weight fluctuation, insomnia, anxiety and depression) as silently as I could, not wanting to complain to my providers too much. Although we cannot know what goes through the minds of our patients when they suffer from side effects of the treatments that we prescribe, I felt that because I was a physician, I should not complain. So, I rarely mentioned these adverse treatment effects unless I was explicitly asked about them.  I wish my doctors would have asked me more about the side effects because I probably would have answered them honestly if they asked. I am sure we could have altered my treatment in such a way that my everyday quality of life improved.  If I return to an oncology practice, I now know I will be better about taking side effects patient histories from my cancer patients.

Dependency

As physicians, we were the ones on whom others relied for their wellbeing and, at times, comfort and consoling. Hence, I found it very difficult to become dependent on others for my personal and professional needs. But my cancer and treatments gave me no choice: I had to be dependent on my family members, friends, and coworkers. I discovered that others wanted to help my husband, Brian, and me, even needed to help us to feel that they were doing something to ease our burden. We came to realize that the therapeutic effects of the dependency were bidirectional. We thus sought opportunities for friends and family members to help us, which consequently lowered our internal barriers against seeking and accepting help. Nonetheless, we found, as others have, that my cancer resulted in significant adverse effects on the lives of our loved ones who cared for us.  In fact, some family members remain in denial about my disease and have unrealistic expectations for a speedy recovery.

Doubt

Not too long after receiving my cancer diagnosis, I experienced overwhelming feelings of doubt and doom. It was difficult to be optimistic and to carry on activities where the results were beyond the time horizon of a few months. Without hope, I was lost and miserable. However, when I found hope to be lacking, it was supplied in abundance by the large network of friends and colleagues that I had established during our careers.

Death

Although I fear the dying process, death itself is another matter entirely. I view death as the absence of both life and suffering, the sudden ending of existence, thought, and possibly the meaning of my life. Regardless of my religious beliefs, I know that death would be a leave-taking from our loved ones, family, and friends. I worry more about what would happen to those I leave behind than I worry about what would happen to me. What happens after death is inevitable and uncontrollable, but I cannot help but feel responsible for the suffering and loneliness I would leave in my wake.  Logically, I know I am not responsible for these things, but I feel responsible nonetheless.

Desperate to Find the Positives

Having enumerated what is so bad about having cancer, I must state that having cancer has, in fact, had beneficial effects on my life. Having cancer motivated me to think about what I was doing every day, to prioritize better, and to spend time on those aspects of my life that are truly important. I have tried, and will continue to try, to give meaning to my remaining time. Having faced death, I have found life to be more intense.

Final Thoughts About Life with Cancer

I hope that by expressing my experiences with cancer, I will encourage providers of cancer care to better understand what their cancer patients are facing. I have this advice: Do not just focus on survival! Encourage your patients to maximize the time that they have and to value each moment each day. Talk to your patients. You must try to understand what it is like to have cancer, to live with it and be treated for it, and to survive it or succumb to it. Acknowledge what you can do to help your patient and do it.

Maintaining a Healthy Relationship When Your Partner has Cancer

When one partner has cancer, both partners are affected, as is their relationship.  Although cancer is a health crisis that can wreak havoc on any relationship, many marriages survive, and even flourish, after cancer. Approaching cancer as “our problem” and finding opportunities to continue to connect as a couple can help to minimize both partners’ emotional distress. It is possible to fight the battle against cancer together and to strengthen your relationship.

Approach cancer as a “we disease.”

Both parties should learn to recognize the signs that you or your partner is feeling stressed. Explore the different ways you may experience stress, and help each other to relax by reading to each other, getting a massage together, taking a bath together, or listening to music together.

Make a list of questions, and attend medical appointments together to develop a shared understanding of what to expect. Write down how medical decisions will affect both of you, and make treatment decisions together.

Strategize together about how best to balance work, family, and self-care. Write down all the tasks that need to be done to keep things running (e.g., meal preparation, paying bills) and who is currently responsible for each task. Then, be honest and realistic about what each of you can and cannot do, and accept help. Helping makes others feel good and will benefit both you and your partner. Ask friends or family to do your laundry, walk the dog, or keep others updated on your condition. You and your partner can then use that extra time to spend together.

Talk about cancer together.

Your partner may avoid talking about cancer for fear of upsetting you. This advice goes for both the person with cancer and the caregiver.  If you feel like talking about cancer, bring the subject up and let your partner know that it’s okay to talk about it. Reassure your partner that you don’t expect him or her to have answers; you just want someone who will listen.

Make a list of questions and develop a shared understanding of what to expect.

Do not anticipate that you know what your partner is thinking or feeling about cancer, or that you know what he or she needs from you.  Encourage your partner to share emotions and concerns, and always ask what he or she also needs.

For example, my husband Brian and I were both struggling to communicate effectively with each other about my illness.  Probably because I am a clinician, I assumed Brian knew information that he didn’t have or that would have been helpful to give him a better grasp of my diagnosis.  In the stress of my disease, I basically forgot that Brian didn’t go to medical school and wasn’t an oncologist.  As a result, he didn’t have—and I didn’t provide for him—many things that would have helped to relieve the stress he was feeling.  Similarly, it seemed to me as if Brian was always in an unusually good mood and we rarely talked about cancer at all.  His inexplicably cheery disposition made me feel as if he didn’t care about what I was going through, or even that he was making light of my diagnosis.  Out of frustration I asked him to join me in several of my psychotherapy sessions.  As it turns out, Brian was deliberately not talking about cancer and acting upbeat because he thought that would help me not dwell on a terrible situation.  What I also learned was that Brian was holding his anxiety inside and not discussing it with me, which was very difficult for him.

Essentially, what we gleaned from those therapy sessions was that we both had the best intentions, but we were really making big mistakes in helping each other deal with this stressful situation.  It may sound trite, but it all basically comes down to keeping open and clear lines of communication; in a nutshell, miscommunication can make a situation that already is fraught with stress much worse, even if both parties are well-intentioned.

Sometimes people coping with cancer feel pressure to maintain a positive outlook for the sake of their partner. Just as your partner may have good reasons to be hopeful, he or she may also have good reasons to be worried or upset.  Try to support and acknowledge both sets of emotions (not just the positive ones).

Focus attention on your relationship

After diagnosis, couples often concentrate their resources and energy on coping with cancer.  While this shift in focus is natural, couples need to continue to relate as spouses and not let cancer completely dominate their lives.  Cancer can affect a relationship by altering roles and responsibilities, expectations, and communication patterns.  Instead of looking back, look ahead.  The way you handle cancer together could chart a new course for your relationship.

When discussing things that need to change in the relationship, pick a time and place that foster relaxation and privacy.  Focus on one or two specific issues, and ask for changes in a positive way.  Avoid criticism, sarcasm, yelling, interrupting, name-calling, and the rehashing of old wounds.  Restating what your partner says to you shows you were listening and allows for correcting misunderstandings.

Assure your partner of your commitment to him or her and to the relationship.  Knowing your support will be steadfast and unwavering regardless of the outcome can be extremely reassuring and comforting for your partner.  Express physical affection even if sexual activity has stopped.  Maintain your loving feelings by kissing, hugging, cuddling and caressing.  Physical touch is often very therapeutic and lets your loved one know he or she is dear to you and is not going through this alone.

Talking to each other about the quality of your relationship (e.g. how good it is, how much you appreciate your partner, etc.), about fond relationship memories and hopes for the future can help you to reconnect and reestablish emotional intimacy.  Spend quality time together by engaging in leisure activities and staying socially active, but do let others know your physical limitations.

The good news is that with thoughtful attention and honest communication, couples can not only maintain their relationships, but also develop a bond that is even stronger and more fulfilling than the bond they had before cancer.

When A Doctor Becomes A Patient

I was jogging one day while on a business trip in LA and collapsed during the run.  Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity.  I remember telling the ER physicians that I was a doctor and recommending my own course of action.  As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.

I wasn’t a doctor anymore. I was a patient.

That was almost a year ago. At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.

Understandably, people are worried that these findings mean doctors know something they’re not telling their patients. But my own experience with illness taught me a simpler truth: when it comes to their own health, doctors are as irrational as everyone else.

I was diagnosed with stage III stomach cancer. I knew that the diagnosis was bad news; I’d seen the disease and its consequences many times while wearing a white coat, a stethoscope dangling from my neck, at a patient’s bedside.

At the beginning, I knew intellectually what was in store for me. I reluctantly allowed myself to be a patient, to trust my doctors and to let them lead me through the treatments and complications and side effects that rolled out with alarming regularity. I submitted to a brutal treatment regimen that had not changed much in over 40 years.

I soon realized I had no idea what kind of rabbit hole I had fallen into.

For my doctors, it was all about the numbers, the staging of my cancer, my loss of weight and strength. For me, too, it was about the numbers: the number of steps I could take by myself; the number of people I counted that passed by our bedroom window; and how many hours I could stay awake before sheer pain and exhaustion set in.

But it was also about more: my world progressively shrinking to a small, sterile, universe between the interminable nausea and the chemo brain that left my head both empty and feverish — between survival and death.

By the reckoning of my physicians, survival was a percentage, and a horrible one — fifteen to seventy percent if I completed the treatment regimen.  That seemed to be an incredibly wide spread.  More and more I found myself thinking about percentages. If I completed the regimen and the disease returned, there were seemingly no other viable treatment options. It was morphine and palliative care. I was 39 years old. Death was a 100 percent certainty, eventually. So did it matter?

During one particularly desperate moment, I decided that I had had enough. I refused further treatment. I lay in my bed without anxiety, comfortable that I had made the correct decision. I watched the events around me, including the distress of my husband, Brian.

My doctors couldn’t override it or persuade me to change my mind, but, luckily, my husband, Brian, could and did. From my mental cocoon, Brian was by my side convincing me to finish treatment.

My dreams of dying were not the products of anxious moments of terror. I was simply incapable of making the right decision for myself. My doctors were professional but ultimately could not decide for me. When neither doctor nor patient can make the right decision, it is vital to have a caring family member advocate on your behalf. Without Brian, and his tireless commitment to my recovery, I wouldn’t be here today.

While I am still battling cancer and have not yet returned to work nor am I leading a normal life, my illness has changed me profoundly as a physician. No amount of doctoring can prepare you for being a patient.  During the past year, I have endured multiple treatment methods, metastasis, and most recently the discovery of a brain tumor that threatens my eyesight.  The past year has been full of the most vulnerable moments in my life.

If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today.