Shortness of breath, air hunger, breathlessness, or the medical term dyspnea—all terms trying to capture one of the most unsettling feelings that a person can have. That feeling that you are under water and need a snorkel. The sensation of tightness in the chest and anxiety all wrapped up together. That feeling of being “too aware” of your own breathing. Dyspnea is the medical term for this symptom, and for simplicity’s sake, I will use that word to encompass all the different terms. For patients with cancer, this symptom occurs commonly but is difficult to treat and has gotten far too little attention than cancer-related pain. It has been estimated to occur in 80% of patients who have an advanced cancer and in up to 20% of all cancer patients regardless of the stage of their disease.
In 2010, the world of lung cancer, and cancer in general, was abuzz with an intervention that improved quality of life and mood, and extended survival in patients with metastatic NSCLC. It was not a new chemotherapy or molecular biological agent. It was “early palliative care.” The original New England Journal of Medicine article several months ago were covered by both Dr. West (here) and Dr. Ramchandran (here). A group from Massachusetts General Hospital (Harvard system), led by Jennifer Temel, conducted the study.
What exactly is “early palliative care”? What exactly was happening in those visits? Could it be replicated? I’m a palliative care doctor, and I’ve been trying to figure this out myself.
Somehow, I have done a quite a few posts on glamorous topics, like nausea/vomiting and constipation. Less common than constipation but still very troublesome is constipation’s bedfellow, diarrhea. For patients who have cancer, diarrhea can arise due to multiple reasons, both due to the disease itself and treatment. Sometimes diarrhea and constipation end up being two sides of a tug-of-war trying to manage the workings of the GI tract. On occasion, constipation can masquerade as diarrhea because an impaction (blockage) of stool can exist while a patient still has some amounts of liquid stool flowing around the blockage.
So what exactly is diarrhea? Medically speaking, it is loosely defined (no pun intended) as having frequent, loose stools associated with urgency (a strong feeling that you have to go), usually 3 or more in a day. Among patients with cancer, it is not uncommon, particularly for patients who have more advanced disease (5-10%, as high as 40%), and it is one of the top ten adverse drug reactions among patients who have cancer and are hospitalized. Diarrhea has the particularly irritating cascade effect of also causing skin irritation and breakdown, adding to how debilitating it can be. In terms of mechanisms causing diarrhea, it is usually a result of some imbalance in fluids being reabsorbed in the gut, fluids being secreted from the gut into the stool, and the gut motility (movement) itself.
Sleep is a precious commodity. While sleep disturbances in cancer patients include both insomnia as well as other sleep disorders (like sleep apnea), I will focus primarily on insomnia and the lack of sleep in this post, as that is by far the most common problem. Sleep disorders are more prevalent in patients with cancer than the general population—33-40% versus 15-20%. This is due to multiple reasons, related to both the disease and treatments. Cancer patients tend to sleep more total hours on average, but have poorer sleep quality — i.e., the sleep is interrupted or there is not enough restorative sleep (deeper stages). A recent review of the literature on sleep disorders in cancer found lung cancer patients to have the highest incidence of sleep disturbances; this may be due to symptoms related to breathing at night, like coexisting lung conditions (emphysema) or troublesome coughing.
Anxiety is common in patients with cancer and can develop as a result of cancer and its treatments. Symptoms of anxiety are seen in up to 48% of all cancer patients, often in the form of a “situational anxiety”—these symptoms include worry as well as physical symptoms like muscle tension, restlessness, palpitations, sweating, and shortness of breath. A smaller percentage of patients actually develop a formal anxiety disorder such as panic disorder, post-traumatic stress disorder, phobias, or generalized anxiety disorder. Typical anxiety symptoms include severe worry, feeling “on edge,” irritability as well as physical symptoms such as nausea/vomiting, diarrhea, shortness of breath, and palpitations. You can see that similar to depression, the physical symptoms of anxiety are similar to those of cancer and treatment side effects. Shortness of breath in particular gives me pause, as it is intimately linked with anxiety—the two can often trigger each other and cause a vicious cycle, making both the anxiety and the shortness of breath much worse.
People often expect that having cancer would make anyone depressed, that it is “normal,” but clinical depression is anything but normal and is imminently treatable. The challenge is that cancer can often cause the same symptoms that are seen in depression, so that depression is under-recognized and consequently undertreated.
What is depression? It is a clinical condition that is marked by one of two major symptoms, depressed mood and loss of interest in most activities (called anhedonia), as well as at least 4 other symptoms. These could include feelings of hopelessness, helplessness, worthlessness, guilt, and thoughts of suicide as well as physical symptoms such as fatigue, anorexia (loss of appetite), sleep problems (too little or too much), and weight loss. If those physical symptoms sound familiar, it’s because they can also occur due to cancer itself; as a result, the physical symptoms are not as helpful in identifying clinical depression.
To complicate things further, both patients and clinicians often mistake clinical depression as a “normal” emotional reaction to the cancer. There is indeed an expected emotional response to this diagnosis, including sadness, and while patients with cancer may have initially difficulty with their normal functioning and social interactions, patients who aren’t depressed are able to adapt. A patient with clinical depression won’t be able to do normal daily functioning on an ongoing basis. They will also persistently not be able to enjoy activities or experience pleasure. Their thought processes will be affected and consumed by helplessness, guilt and low self-esteem as well as hopelessness. A despondency accompanies the hopelessness, as opposed to a patient who feels hopeless due to discovering their cancer is incurable but can re-direct hope to something else (life prolongation, good quality of life). Actively seeking an early death is more indicative of clinical depression, in the absence of poorly controlled symptoms or inadequate social support.
What is palliative care? I get this question at least once a day, not only from patients and families but also from other clinicians. While many GRACE members are familiar with palliative care, there still exists a lot of confusion out there about what palliative care exactly is. To be honest, back when I started medical school, I didn’t know what it was myself.
The World Health Organization (WHO) defines palliative care now as:
“…an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment of pain and other problems—physical, psychosocial, and spiritual.”
In the WHO definition, there is no mention of death and dying, because a patient does not have to be dying to receive palliative care. The overall philosophy of palliative care is the relief of suffering and the enhancement of quality of life. Most commonly, palliative care is practiced with a multidisciplinary team approach and focuses on the patient and the family as the unit of care. In the US, palliative care programs initially started out as hospital-based, or inpatient, programs but are now growing in the outpatient realm with clinics and other outpatient programs.