Tuesday, February 9, 2010

Chronic Care and Patient-Centered Medicine Paper By: Irene S. Switankowsky

The chronically-ill patient is a distinct kind of patient that requires a much more involved and complex kind of medical care. Given the growing number of chronically-ill patients because of our increasingly aging population, chronic care is becoming a real challenge for medical professionals. Most chronically-ill patients have been ill for sometime. Any patient who has any type of incurable, long-term disease (such as arthritis,lupus, congestive heart disease, renal disease, Parkinson's and so on) is considered to bechronically-ill. Most chronically-ill patients seek constant medical attention. Usually, thephysician and patient form a unique relationship over the many years of patient care, depending on the patient's medical, cultural and educational needs, background, and howaggressive his/her disease has been over the years. Because of these unknown psychological and physical facets of chronic illness, chronic care patients can pose special difficulties for the physician during the medical encounter.

One way for physicians to cope effectively with a growing number of chronically-ill patients is by developing a patient-centered approach for treating such patients so that they feel properly cared for during each medical interaction. The patient-centeredapproach ensures that a patient's beliefs and values are central when treatments areproposed and medications prescribed. In other words, the treatments and medicationsmust be specifically tailored to the patient's individual needs by assessing certain keyaspects of the patient's life and his/her long-term and short-term goals before proposinga treatment plan. For instance, if a chronically-ill patient is still working, his/hermedications must not be so debilitating that (s)he is always mentally foggy. Alternatively, if the chronically-ill patient is in a lot of pain and feels unable to properly function at work, his/her medication dosages must be amended to suit his/her needs.

Further, the chronically-ill patient's character traits and personality must be taken intoconsideration when treatments are proposed. For instance, some chronically-ill patients may have a difficult time coping with their disease because of their unique emotionalreactions to the disease and coping mechanisms. Some patients can tolerate pain much more readily than others. Other patients have difficulty coping with increased disability,pain, and problems with mobility. This is especially the case if a patient is just newlydiagnosed with a chronic disease, because (s)he is still trying to get accustomed to the physical and psychological affects of the disease on his/her life. Alternatively, some chronically-ill patients who have suffered with the disease for a long time may still find it difficult to effectively cope because of the continuous and/or increased pain that they are experiencing. One of the most significant problems for chronically-ill patients is that they have difficulty to function as normal people do because of their illness. Thus, the physician has to determine what the patient precisely needs, given his/her life and responsibilities, before (s)he can specifically tailor the treatments.

Given all of these factors, the medical interaction between a chronically-ill patient and the physician can be time-consuming. Chronically-ill patients usually come and see the doctor when they feel desperate to find for some kind of comfort and relief from pain. The medical interaction between physician and patient is very different from other patients with acute problems. Some of a chronically-ill patient's reasons for seeking medical help may be nebulous and difficult to measure and/or to determine decisively. This makes it difficult for a physician to understand precisely what (s)he could do to help the patient. Sometimes, a chronically-ill patient needs reassurance that she'll be okay and will be taken care of. Other times, the patient simply needs to know that (s)he is doing the best that (s)he can for him/herself, given his/her illness. The nebulousness of the chronically-ill patient'sconcerns can make the medical interview difficult for physicians.

I. Difficulties for Physicians

To most effectively care for a chronically-ill patient, the physician should rely on an interactive, patient-centered model in which both the patient and physician play an active role in gathering information about the patients illness and prognosis. In order for the medical interaction with the patient to be most effective, the patient must provide thephysician with an idea of how the illness is affecting his/her life and how (s)he is coping with the disease overall. Given the nature of chronic illness, some medical interactions willbe more successful than others. Occasionally, the terminally-ill patient's personality or character may interfere with obtaining objective and precise data about the illness and treatments. Every patient has a unique personality, but because of the stress which accompanies chronic illness, a patient's coping behaviours may become exaggerated or even dysfunctional. Patients can sometimes use different communication styles during thedoctor's appointment. It can be beneficial for the physician to determine which style the patient is relying on mostly during the medical appointment so that (s)he can be of most assistance to the patient most effectively. Here are a few of the most common ones.

First, some chronically-ill patient's may be dependent and demanding. Such patients try to impress the physician with the urgent quality of their requests. They usually need specialattention, a lot of reassurance, constant advice, and when they don't get it they becomewithdrawn or complain needlessly. Such chronically-ill patients are difficult to deal with because sometimes the physician has no idea how to most effectively reach the patient inhis/her need. Regardless of how much care the physician offers, the patient still appearsdissatisfied. This can be very frustrating because the physician usually has manychronically-ill patients to care for in his medical practise. Sometimes by being empathic aphysician can help dependent patients to cope better. Other times, empowering patients to not be so out of control can help them to feel more able to cope with the disease.

Second, some chronically-ill patients may become overly controlled by trying to gain as much knowledge about their illness as possible. Given the Internet, patients can get information overload and sometimes misinterpret information. Such patients are usually punctual for appointments, and overly preoccupied with the right and wrong ways of taking their medications. Chronic illness, threatens loss of control for patients who cope this way. Such patients must be permitted to take charge of their own health care by giving positive feedback about their efforts and abilities. To most effectively care for such patients, physicians should methodically search for solutions to the unique problems that a patient has to endure living with a chronic illness.

Third, some chronically-ill patients may exhibit a guarded or paranoid style. Such chronically-ill patients are inclined to be suspicious of health care professionals and the medical system even before they become ill. Illness may sometimes exacerbate suchparanoia. They may have a long list of slights from relatives and friends about how a similar chronic illness was badly handled by other physicians. Suspicious patients are really difficult for physicians to care for because they will look for even the slightest things to be unhappy about in relation to their treatment. Further, guarded patients are poor communicators, making it difficult for the physician to know how to most effectively helpthe patient, given his/her unique medical concerns.

Fourth, chronically-ill patients may also engage in somatization. Somatization occurs when a patient describes his/her symptoms of illness vaguely and inconsistently, denies any emotional distress, has a hysterical personality style, and has difficulty describing emotions or inner processes in a concise manner. Somatization usually occurs when patients amplify the symptoms of their disease, or they may report physical symptoms of a condition, while de-emphasizing emotional or psychosocial symptoms. One example of this is masked depression, in which a depressed Chronically-ill patient emphasizes symptoms, such as fatigue, headache, insomnia, or weight gain while being unaware of, or disinclined tovolunteer information about his/her depressed mood or hopelessness.

The medical interaction between physician and patient is very different for the somatizing patient. One thing that a physician should do is to listen carefully to the patient, and respond empathically. This will lay the foundation for developing an interactive, patient-centered approach during the medical encounter. It is necessary for the physician to builda trusting relationship with the patient to validate his/her suffering. In addition, it is essential for the physician to devote even a few minutes to 'healthy talk' during a medical encounter with the chronically-ill patient. What I mean by 'healthy talk' is that chronically-illpatients need to focus on something positive beyond the disease in order to feel better, and during the medical interaction, the physician should engage in such talk with the patient.By being genuinely empathic, the physician may be able to break through the 'body' barrier and allow the patient to be more open with the physician. Lastly, the physician should schedule a follow-up appointment so that the patient does not feel that (s)he can needs a new symptom in order to come and see him again. This will also help the chronically-ill patient feel more cared for by the physician.

II. Difficult Emotions Exhibited by Chronically-ill Patients

Chronically-ill patients usually exhibit difficult emotions such as anxiety, anger, depression, and denial because of the disease. These difficult emotions frequently complicate the medical encounter between the physician and patient. Strong negative emotions can produce behaviours that prevent the physician from obtaining accurate information, makinggood clinical judgments, educating patients, and establishing therapeutic relationships. Empathic responses by the physician can facilitate the medical interaction with chronically-ill patients by making it more efficient and therapeutic. By providing an empathic interaction with the patient, a physician can provide patient-centered medical care that is necessary for chronically-ill patients to feel genuinely cared for.

Many chronically-ill patients suffer from some form of psychological anxiety or depression. Common sources of anxiety are feelings of helplessness, fear of pain and disability, inability to accept warmth or tenderness, fear of expressing anger, and uncertainty about the future. To minimize anxiety, the physician should allow the chronically-ill patient to express his/her feelings as much as possible by actively listening to the patient without interrupting, and making sure that his/her psychological needs and expectations are met as much as possible.

Anger is a much more difficult emotion for chronically-ill patients to overcome and for physicians to cope with during medical appointments. Angry patients usually act and respond to treatment in a hostile manner. This hostility usually has nothing to do with the physician personally but rather results from a background of negative emotions which relateto the patient's own medical situation, such as inconsiderate care by previous health careprofessionals, life disappointments, or perceived injustices. One way that the physician could help a chronically-ill patient who experiences such emotions is by continuing to listen while explaining aspects of his/her illness as neutrally as possible. Sometimes this approach can help chronically-ill patients to better cope with their chronic illness.

Many chronically-ill patients experience some form of depression because of the continuous pain and discomfort that they feel from the disease. Major depressive disorders may be the underlying problem in a substantial percentage of patients who complain of fatigue, weakness, lack of energy, insomnia, backache or headache. Sadly, depression is a common response to chronic illness. Depressive characteristics include feelings of worthlessness, hopelessness, apathy, and guilt, together with a profoundly empty andlonely feeling. These usually become apparent in the patient's manner, tone of voice, posture and speech. The patient may think slowly and speak very little, or (s)he may become teary and excessively emotional. One way that the physician can help such a patient is by being empathic and making statements such as, "You look sad," or "You look as if this has gottenyou down". Such statements can help a chronically-ill patient feel more at ease and to openup and discuss how (s)he is feeling more readily.

Some chronically-ill patients are in denial about the disease and sometimes even about their symptoms. Such patients have a tendency to play down their physical symptoms or to even deny the emotional impact of their diagnosis and/or prognosis. Denial can lead to serious delays in seeking care, but it may also be a useful mechanism for coping with badnews. There are some patients who are especially prone to denial. These are usually patients who don't want to worry others (such as family members) about their illness and how they are feeling. Such patients don't feel comfortable receiving support from others. They don't want to make a nuisance of themselves. This can be a real drawback to getting the medical care that the chronically-ill patient needs.

The physician must earn a patient's trust by being empathic, respectful, and genuine towards him/her, regardless of how (s)he reacts. Some clinicians believe that patients do not trust them. Some of these clinicians would like to see their patients not be as demanding as they are and to be much more silent and accepting. However, this is no longer a reality for most clinicians since the culture of paternalism towards patients is gone. Today, patients want to be acknowledged and to actively participate in their own health care as much as possible. This presupposes that physicians must now earn a patient's trust in each medical encounter. Patients are encouraged to assert themselves if they feel betrayed, injured or uncared for. And this is especially the case for chronically-ill patients who suffer from pain and discomfort all the time. As we saw in Part I, chronically-ill patients can be difficult to handle. Several strategies need to be in place for physicians to empathically treat chronically-ill patients.

Empathic communication can help a physician to build rapport with the patient in order to establish trust. It consists of open, honest communication with a patient. Physician honesty consists of not withholding important information related to the patient's diagnosis and treatment nor biassing a patient's prognosis and/or treatments through exaggerations such as: if you don't take such a medication or undergo a particular surgery you will be ina wheelchair. Even if the physician strongly believes that a particular treatment or surgery will really help a patient, (s)he should not try to enforce it by exaggerating the effects of nothaving it.

Empathy requires that the physician puts him/herself in the patient's medical predicament. For instance, the physician could ask him/herself the following questions:

How would I feel if I was always experiencing pain, fatigue, and total exhaustion?
How would I feel if I couldn't sleep well for months or even years?
How would I feel if the disease was constantly reducing my ability to do even the ordinary things that I did with ease even a few months or weeks ago?
How would I feel if I couldn't do what I loved doing in the past, such as jogging, sailing, going to the theatre, travelling, and so on.

By answering some of these questions, the physician will be able to get a general idea as to what the chronically-ill patient may be feeling. This can fundamentally help the physician be empathic and honest in his/her communications with the patient.

III. How Can Physicians Best Help Chronically-ill Patients?

In order to discuss the patient's unique needs, the physician should engage in open and honest communication as much as possible. To achieve this, the physician must first actively listen to the chronically-ill patient by allowing enough time to talk for the patient to share his/her feelings about the illness. There is nothing worse than for a physician to be pressed for time when (s)he is talking to a Chronically-ill patient. One way to ensure that the patient has a sufficient amount of time is by booking an hour slot for the patient's appointment. That way, the physician will not feel pressed for time and appear hurried.

It is advisable for the physician to allow the patient to do as much talking as (s)he needs to without interrupting. The physician should allow the patient to state his/her concerns, even if they don't surface in the first few minutes of the appointment. The physician should listen not only to what the chronically-ill patient says but to what (s)he doesn't say but may be feeling. Many patients exhibit nonverbal cues in the form of gestures or facial expressions that the physician can only pick up on if (s)he is attentive to the patient. The physician should avoid inadvertently trivializing a patient's experience of illness.

In conclusion, the patient-centered approach encourages the physician to treat the chronically-ill patient in a way that is respectful and empathic. Chronically-ill patients seem to be in a category of their own when it comes to determining how to treat them in an honest and respectful manner. Chronically-ill patients are always in pain, experience fatigue andcontinuous debilitation because of their illness. Therefore, they need a different kind of careby the physician and specialists. In other words, chronically-ill patients need a lot of encouragement and psychological/emotional care. There's no getting away from all the emotional turmoil and physical pain that a chronically-ill patient experiences. Chronically-illpatients can be difficult to appease and treat so that they feel completely cared for. Usually,chronically-ill patients have a whole medical team of professionals to care for them, ranging from specialists to physiotherapists, and counsellors and general practitioners. Each level of assistance must be geared towards the patient by physicians who are in the most prominent position to offer humane care.

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