Palliative Care for Advanced Lung Disease
Multi-factorial barriers in current health care systems impede the provision of palliative care, including the lack of familiarity among health care professionals. --Kimberly A. Hardin, MD, Frederick Meyers, MD, Samuel Louie, MD
The statement at the top is from the article "Integrating palliative care in severe chronic obstructive lung disease." [COPD. 2008 Aug;5(4):207-20. PubMed] The article provides a good review of the importance of integrating palliative care into the treatment of chronic obstructive lung disease (COPD). That is since "The chronic obstructive pulmonary disease (COPD) patient population is increasing worldwide, including 24 million American adults. Nearly 124,000 Americans died from COPD in 2004, and 200,000 to 300,000 die each year in Europe." And more emphasis should be focused in providing palliative care for COPD because "By 2020, COPD is likely to account for over 6 million annual deaths worldwide, which will make it the third leading cause of death." Moreover, early referral into palliative care is important because "Similar to cancer patients, COPD patients experience the same symptom burdens and decreased QOL [quality of life] through physical, psychological, spiritual, and social impairments." But even more importantly "Integrating palliative care services with disease-directed therapy may benefit patients with severe COPD before invasive interventions, such as mechanical ventilation and tracheostomy, confine them to long-term care facilities or prolonged hospitalization, where their QOL may deteriorate further." But this scenario of practice is common in the USA for patients with COPD, which can also be corrected when it is acknowledge that "Pulmonary physicians and primary care professionals will need education and experience in the general principles and practices of palliative care to apply them to COPD patients."
One of the hallmarks of advanced lung disease is shortness of breath and difficulty breathing (dyspnea). Just like pain, dyspnea can be a profound and difficult symptom burden to palliate. Pain and dyspnea are probably two of the most discomforting symptoms, and the two are often accompanied by one another. What's interesting is that when one is treated the other is also better controlled. In fact, the use of an opioid analgesic drug such as morphine can treat both pain and subside dyspnea. Unfortunately, many physicians under-treat pain and may fear that the opioid may worsen the breathing and hasten death. In the article mentioned above, there was a statement that "Pain, a symptom not commonly thought of in patients with COPD, is nearly as prevalent as in patients with lung cancer (21% vs. 28%, respectively). Pain is often under-treated in severe COPD patients due to the misperception that opioids and sedatives may hasten death. Anxiety, depression, and pain are interdependent, exacerbated by each other. All three are present in up to 90% of COPD patients." This is not the case for physicians and nurses who are educated and certified in palliative care.
Life-limiting lung disease often refers to chronic obstructive pulmonary disease (COPD), but there are other types of life-limiting lung diseases. In any case, when a person is diagnosed with a life-limiting lung disease, the disease progression usually follows a trajectory of decline that takes a prolonged period of time before becoming terminal (6 months left to live). Palliative care should be integrated into the treatment from early on in the disease trajectory so that quality of life can be optimized with alternative and complementary treatment options. It is also important for the person to be introduced to advanced care planning early on so that preferences for terminal care will be established and known.
"Chronic obstructive pulmonary disease (COPD) is listed on death certificates as the primary or a contributing cause of death for more than 220,000 adults who die in the United States each year. That is not only a lot of disease, but also a lot of deaths. Because death from COPD commonly occurs after prolonged functional decline and much suffering, there is particular need for palliative care of the many patients who die from this disease." --John Hansen-Flaschen MD
The above statement is from the article "Chronic obstructive pulmonary disease: the last year of life." [Respir Care. 2004 Jan;49(1):90-7. PubMed.]
Respiratory Therapists and Palliative Care
Curriculums may be overcrowded, yet how can the education system overlook palliative care—care that the practitioner provides on a daily basis? --Melaine Giordano, MSRN, CPFT
The above statement is from the article "The Respiratory Therapist and Palliative Care." [Respir Care. 2000 Dec;45(12):1468-74 PubMed] Although this article was published 10 years ago, it still pretty well summarizes the need for Respiratory Therapist's (RT's) to be thoroughly educated and proficient in palliative care. Yet this has not happened.
Ms. Giordano made a number of important comments in the above noted article. For one thing, she pointed out that "Over 350,000 deaths (1 in 7 deaths) in 1997 were the result of lung disease: lung cancer accounted for 156,900 deaths, chronic obstructive pulmonary disease (COPD) 109,029, and pneumonia/influenza 82,448." [Those figures are substantially higher these days.] Another important point she made is "Keep in mind that chronic-disease-related deaths account for nearly 72% of all deaths in the United States." And she noted that "Additionally, the older population currently accounts for over 78% of all deaths in the United States."
Although most people still do not know what an RT is, they play a very important role in providing care to people with respiratory illness. Patient's with respiratory problems are found in every area of medical practice, which Ms. Giordano summarized by stating that "RTs can be found working throughout the health care continuum, including acute care facilities, rehabilitation units, long-term care facilities, home health agencies, physician offices, and medical equipment companies. However, 75.5% of RTs work in acute care settings, particularly in critical care areas such as the intensive care unit (ICU), emergency department, recovery room, or neonatal unit, where end-of-life care is a daily event." She then asked the question "Are RTs adequately educated and skilled in palliative care?" Followed by the statement "As with most health professions, the palliative care that RTs provide would be greatly enhanced by thorough instruction about the end of life." And palliative respiratory therapy is one of the most essential needs of those with life-limiting conditions. As was pointed out that "Perhaps the two most distressing symptoms, particularly with pulmonary patients, are pain and dyspnea. Uncontrolled pain and dyspnea are quite disturbing to patients, as well as to those witnessing the distress." And since most people die within a hospital, the role of the RT in learning and providing palliative care is just as essential as is curative care and heroic care. Ms. Giordano corroborrated this with a remark that "No doubt the quality of life of individuals who are suffering from the end stages of chronic disease would be greatly enhanced by palliative care delivered by RTs, care that addresses the physical, emotional, psychological, and spiritual needs of the dying and their loved ones."
In California there is now a law that requires all RTs to take a 4 hour ethics course every 4 years, which is not a requirement for physicians and nurses. Are RTs considered more prone to unethical practice than other clinicians? No, but RTs are very far behind in being educated in palliative care than are physicians and nurses. Biomedical ethics is important (for all clinicians), but what is needed even more is a law that requires all clinicians to become certified in palliative care.
"If care for the chronically ill patient is equivalent to palliative care, then there is certainly a real need for RTs [Respiratory Therapist's] to be trained in and to understand the principles of palliative care. This is a very seminal question. There is, in fact, very little active training for RTs in palliative care. Yet, the RT is often at the bedside during end-of-life care." --Mitchell M Levy, MD
The above statement is from the article "Palliative Care in Respiratory Care: Conference Summary." [Respir Care. 2000 Dec;45(12):1534-40. PubMed] This was an article summarizing a conference conducted by a group of physicians and nurses who published a special issue about palliative care in the journal Respiratory Care. And now 10 years later, RT's are still not required to be formally educated in palliative care.
Although palliative respiratory therapy (PRT) should be one of the most essential aspects of Respiratory Therapy practice, it actually is one of the least areas that Respiratory Therapist's (RTs) are educated and skilled at. Conversely, most RTs are required to take bi-annual cardiopulmonary resuscitation (CPR) and multiple (redundant) advanced life support (ALS) courses, such as neonatal, pediatric and adult ALS. For some RTs, there is also advanced trauma life support. As a result of this situation, there is a tremendous imbalance in the amount of education and competency in curative and heroic care vs. palliative care. This is quite an interesting paradox when you consider how routinely RTs encounter patients with life-limiting diseases and those with a terminal illness. Moreover, terminal dyspnea (shortness of breath or breathlessness) is a symptom burden that is as discomforting and prevalent as terminal pain. In fact, pain and dyspnea often accompany and exacerbate one another as a cluster of symptoms, and they also respond effectively to opioid administration.
"Of approximately 100,000 practicing RTs in the United States, three fourths practice in acute-care areas where participation in termination of life support may be part of their job." --David C Willms MD and Jodette A Brewer RRT [Respir Care. 2005 Aug;50(8):1046-9. PubMed]