Palliative care is not a new concept. In fact, it is centuries old. Prior to the discovery of antibiotics, giving comfort care to the sick and infirm was about all that could be done. The hospice and palliative care movement began in the US in the 1970s when it was recognized that care for the seriously ill and dying was not optimal. With the resurgence of information on hospice in the past four decades, there has been confusion between the concepts of palliative care and hospice. Hospice can best be described as a group of services that patients qualify for when their disease has progressed to a stage when it is likely that they will die within the next six months. Palliative care is comfort care. Palliative care is control or relief of bothersome symptoms. Palliative care can be provided to any patient, of any age, at any stage of their disease. Palliative care is a universal good, however it is most often considered when curative care has not been successful and the patient is approaching end of life.
According to the National Cancer Institute, palliative care is provided to improve the quality of life in patients who have a serious or life-threatening disease.  Serious diseases such as pneumonia are often curable, but the symptoms are distressing, thus comfort care is indicated. COPD (Chronic obstructive pulmonary disease) is a serious disease, and although very treatable, is not yet curable. COPD is now the third leading cause of death in the Unites States and a major cause of disability . Individuals with COPD need to be provided with palliative care when their symptoms become bothersome. Respiratory therapists need to be well versed in palliative care, what it encompasses and how and when it should to be offered to patients.
Palliative care has not always received the attention it deserves in the literature. Relatively few articles addressing end-of-life care were published prior to 2001. Palliation of dyspnea in COPD has been the most widely researched and published intervention because it is the most common distressing symptom in advanced COPD. After 2001, many more articles addressed palliative care, but relatively few addressed COPD. In 2012, an article published in the European Respiratory Journal made a clear case for early intervention of palliative care in our COPD patients , which is the road we all need to take. Why is this such a challenge? Why are we not providing comfort care to our patients with advanced COPD on a regular basis?
Part of the answer relates to the perceived barriers to palliative care, which can be separated into patient factors, physician factors and therapist factors.
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Many will point the finger directly back to the patient citing; "we don't know their wishes". This is a legitimate and honest response. Research indicates that <15% of intensive care unit (ICU) patients retain decision making capacity. During an exacerbation is it extremely difficult to communicate about end-of-life. Additionally, a 2008 UK (United Kingdom) COPD Audit identified that only 13% of ICUs provided information to COPD patients when they became stable and <25% of oxygen dependent patients has discussed care with the medical staff. This is not just an issue in America - lack of palliative care for COPD is a global problem. In order to dispel perceived barriers, the remainder of this article will provide information to therapists on what palliative services can be offered their patients, many without an order.
The Need for Palliative Care
The most common symptoms reported by individuals with COPD include dyspnea, pain, cough, anorexia, confusion, depression and anxiety. Therapeutic interventions in the home and in healthcare institutions can usually alleviate dyspnea and cough. When breathing is comfortable, anxiety is usually relieved. Pain relief is a little more complicated, but is readily available. Confusion and depression can also be treated, but many of the commonly used agents tend to depress respirations and are not recommended for patients with lung disease. Anorexia/cachexia, not uncommon in adults with COPD is likewise challenging. To provide palliation of these bothersome symptoms effectively, healthcare professionals need to have an awareness of at least two or three interventions for each of these symptoms, understanding that one-size most definitely is not going to fit all.
Dyspnea has many causes. Treatment is predicated on the underlying reason for distress. If the cause is likely airway obstruction, bronchodilators are effective. If hypoxia is driving the dyspnea, low flow oxygen is generally prescribed. When the patient has comorbidities including congestive heart failure (CHF), a diuretic will often alleviate the sensation of breathlessness, as will elevating the head of the bed, having the patient propped up with pillows and providing cool air facial stimulation. Muscle fatigue, exacerbated by the increase work of breathing can also result in dyspnea. Any intervention to decrease the work of breathing including may be helpful. Anxiety, causing the patient to be dyspneic can be reversed to a certain extent by having the patient do pursed lip, or "panic control" breathing. Even a mild change in breathing conditions can be frightening for people with lung disease. Addressing the patient in calm manner and staying with them, offering support while they settle into a more optimal breathing pattern (pursed lip or diaphragmatic) may prevent an emergency. While these suggestions may not seem like palliative care, alleviation of symptoms in COPD is the goal. At the end of life, when patients with end-stage COPD have made the decision not to be ventilated, morphine is the only drug with a proven effect on dyspnea, but NOT when it is delivered by a nebulizer.
Pain affects the lives of more than a hundred million Americans, making its control of enormous value to our patients. Pain in COPD has many causes, one of them being dyspnea. Pain is also associated with comorbidities. When addressing pain management it is essential to establish the level of pain. This can be done using a visual analog scale. Most pain can be alleviated by the use of corticosteroids or opioids. When using opioids, starting with a lower dose and gradually increasing it as needed may reduce the incidence of respiratory depression.
Confusion/Anxiety can be debilitating. Determining the cause of the confusion, which can lead to anxiety, is key to the intervention. If confusion is caused by hypoxia, provide low flow O2. If confusion is caused by drugs, check with the physician/pharmacist to see if other medications can be substituted. Social interaction, music therapy and pet therapy have all been used successfully in patients with confusion. Giving patients with COPD something else to think about may relieve their anxiety and confusion.
Anorexia/Cachexia is not uncommon in patients with COPD. In the final days of life, energy needs decline, as does appetite. If patients do not want to eat, forcing them is not helpful. Checking first to see if the patient has mouth sores or ill-fitting dentures making eating painful is helpful. Offering soft foods, ice cream, ice chips to provide hydration is helpful but not mandatory. Decreased appetite and weight loss at the end of life are common and may be adaptive.
Depression and loneliness are not uncommon in advanced COPD. The depression may be drug induced or a factor of "unfinished business". Asking an individual if there is someone they would like to talk to, or something they would like to write down may be useful. Depression, while not physical pain, can cause emotional pain, which should be addressed by healthcare professionals.
Putting it All Together
Patients with COPD depend on us for their care. We are there for them during and after the exacerbations. We talk to them about their medication delivery systems, visit with them about smoking/smoking cessation and encourage them to give pulmonary rehabilitation a try. To desert them when they get to the advanced stages and are struggling with bothersome symptoms is inhumane. We cannot change the course of their disease process but we can certainly visit with them about what to expect, and can assure them that when the time comes we will make them as comfortable as possible. Access the resources available at your hospital; social workers, the chaplaincy, the palliative care committee, the physician. We can no longer say that this is "not our job". The time has come to recognize palliative care as a vital component of disease management, and recognize that this is a necessity for our COPD patients.
Helen M. Sorenson is adjunct associate professor, UT Health Science Center, San Antonio.
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