Improving end-of-life care for patients with chronic obstructive pulmonary disease

Global chronic obstructive pulmonary disease care

Worldwide, chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death [Mannino and Kiri, 2006], although individuals diagnosed with this disease around the globe do not always fare well in the medical community. An article from Japan states that patients with end-stage COPD have more deterioration in quality of life, more dyspnea, anxiety, appetite loss and general fatigue compared with patients with lung cancer [Katsura, 2003]. The article goes on to state that patients with COPD are also more likely to be treated aggressively with life-sustaining therapy, and receive inadequate symptom control [Katsura, 2003]. French authors reveal a similar lack of palliative care for patients with COPD. In 43% of patients with end-stage COPD, there was limited care [du Couedic et al. 2012]. Analysis of interviews showed that the subject of death was rarely or never discussed when the diagnosis was COPD [du Couedic et al. 2012]. Researchers in Australia also noted a lack of palliative care for individuals with COPD [Disler et al. 2012]. An integrated review to determine what approach was used to reduce symptoms at end of life revealed a range of palliative interventions. Although many components were present, there appeared to be limited evidence for health service coordination and active management of palliative care [Disler et al. 2012]. It is clear that medical institutions know how to deliver palliative care, just not always effectively for patients with end-stage COPD.

Lack of understanding

Palliative care is a term used liberally when discussing hospice and end-of-life care, but not always when addressing symptom control. Many healthcare professionals perceive palliative care to be only for the dying. Spence and colleagues did a qualitative study of professionals delivering palliative care to people with COPD. According to the participants, when treating patients with COPD the focus was on symptom management but predominately using an acute care model [Spence et al. 2009]. The delivery of palliative care was viewed as a specialist’s role rather than an integral component of care. Patients with COPD have many bothersome symptoms; dyspnea is just one of them. These symptoms unfortunately exist long before the patient is deemed to have end-stage disease. Nonhospice palliative care is a reality and can be offered at the same time as life-extending and curative therapies [Kelley and Meier, 2010]. Palliative care is for symptom management in seriously ill patients, and people with COPD are often seriously ill. Unfortunately this lack of understanding extends to many in the healthcare community.

Palliative care: malignancy versus nonmalignant chronic disease

Palliative care for patients with cancer has been an active component of disease management for decades. Care provided to those dying of malignant disease has been well researched and documented [Crawford, 2010]. Unfortunately, inequality in the amount of published research concerning patients with malignant and nonmalignant disease has also been well documented. Doing a brief PubMed search using 10 years, humans and English language as filters, revealed the following: palliative care and COPD: 220 publications; palliative care and cancer: 9214 publications. A retrospective review published in 2010 compared cancer versus noncancer deaths in Hong Kong in regards to utilization of public healthcare in the last 6 months of life, end-of-life care provided and documentation of any advance care planning [Lau et al. 2010]. Of the total number diagnosed with nonmalignant disease, over a third (36.8%) were diagnosed with COPD. Overall percentages determined from the review revealed that palliative care was provided to 79.2% of patients with cancer but only 1.4% of patients without cancer [Lau et al. 2010]. Additionally, within the last 2 weeks of life, patients with nonmalignant diagnoses received more invasive interventions, had fewer symptoms documented, fewer sedatives or analgesics prescribed and more cardiopulmonary resuscitation performed. When advance care planning was done, a higher proportion of the discussions were first documented within 3 days of death in COPD and congestive heart failure compared with patients with cancer and chronic renal failure [Lau et al. 2010]. Other authors and researchers have concluded similar inequalities between palliative care provided to patients with and without cancer. The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT) published in 2000 revealed that hospitalized patients with cancer and advanced COPD preferred comfort care, yet dyspnea and pain persisted in both groups. Additionally patients with COPD with advanced disease were more likely to be treated with life-sustaining interventions compared with patients with cancer [Claessens et al. 2000]. Another study published in 2000 compared 50 patients with severe COPD and 50 patients with nonresectable non-small cell lung cancer (NSCLC). In this study the Hospital Anxiety and Depression Scale revealed that 90% of patients with COPD had clinically relevant anxiety or depression compared with 52% of the NSCLC cohort [Gore et al. 2000]. With regard to social support, 30% of individuals with NSCLC were seen by palliative care services whereas none of the patients with COPD were evaluated [Gore et al. 2010]. More recent articles addressing differences in symptoms/palliative care between patients with cancer and COPD corroborate earlier publications. Pantilat and colleagues looked at patients over 65 years of age with COPD, cancer or heart failure regarding symptom severity during hospitalization and 2 weeks post discharge [Pantilat et al. 2012]. While hospitalized, there was no association between primary diagnosis and symptom severity. At the 2-week follow up, however, patients with COPD had a higher percent of severe pain (p = 0.001), dyspnea (p = 0.05) and overall symptom burden (p = 0.001) than those with cancer or heart failure. Habraken and colleagues compared health-related quality of life (HRQOL) in patients with severe COPD and advanced NSCLC [Habraken et al. 2009]. The conclusion was that patients with end-stage COPD experienced poor HRQOL or worse than that of patients with advanced NSCLC. The evidence in all of these publications clearly advocates for more and better access to palliative care for patients with severe COPD.

Barriers to palliative care

One frequently mentioned barrier to the provision of palliative care, when the diagnosis is COPD, is the uncertainty of the ‘end-stage’ prognosis. Another publication cited the patient’s lack of understanding of their diagnosis and prognosis as being barriers to communication about COPD and palliative care [Gardiner et al. 2010]. Horton and colleagues has done a good job of summarizing other common barriers to palliative care for those with COPD [Horton et al. 2013]. These include the patient’s limited comprehension of treatment options, failure to understand that COPD is a life-threatening disease, and limited ability to predict when supportive or palliative care services would be helpful and welcomed by the patient and family. A qualitative study published in 2013 brings to light another potential barrier, the distress caused simply by discussing palliative care with the patient, owing to the historical association between dying, hospice and palliative care [Hayle et al. 2013]. Additional barriers to advance planning for end-of-life care in COPD proposed by Gott and colleagues are: lack of consensus regarding who should initiate advance care planning conversations, connotations of comparing COPD with cancer, the conflict between advance-care planning and active chronic disease management, and the lack of understanding of ‘end of life’ within the context of COPD [Gott et al. 2009]. The collective wisdom of the many clinicians who have examined end-of-life care in COPD is to be applauded. New ideas, new interventions and new realizations all lead in a forward direction, but we must also look backwards. Awareness of the barriers to good end-of-life care in COPD allows for the building of bridges to overcome some of the prevalent miscommunication and misconceptions.

Predictability of the prognosis

Over 15 years ago, patients who had been hospitalized for an acute exacerbation of COPD (AECOPD) had a median survival of 2 years. Additionally, about half of these patients were readmitted to hospital within 6 months [Connors et al. 1996]. The BODE Index, published in 2004, used a composite score of body mass index, airflow obstruction, dyspnea and exercise capacity, and was deemed to be highly predictive of mortality [Celli et al. 2004]. The admission of a patient with COPD with AECOPD, severe hypoxia and elevated carbon dioxide, a pH of less than 7.35 and an elevated C-reactive protein level certainly raised red flags, although this was not always predictive of death, confirming the unpredictability of a terminal diagnosis. More recently Mannino and colleagues developed a four-point scale to classify the severity of COPD with 1.00 being very mild and 4.00 as very severe [Mannino et al. 2013]. This severity scale included other components in addition to lung function, such as symptoms, exacerbation history, quality of life, comorbidities and body mass index. Evaluation of the scores over time gave additional information to physicians regarding both improvement and worsening of the disease and provided a more realistic prognosis of mortality. Another study published in 2013 has analyzed data from patients with severe COPD to determine if a change in key parameters over time could predict short-term mortality. Benzo and colleagues reported that a change in some variables, with defined cut points, increased significantly and independently the odds of dying in 12 months [Benzo et al. 2013]. The earliest and strongest predictors associated with increased 12-month mortality were a decrease in gait speed of 0.14 m/s or 6 min walk distance by 50 m, a decrease in maximal inspiratory pressure greater than 11 cmH₂O, a decrease in resting room air partial pressure of oxygen of greater than 5 mmHg, an increase in resting room air partial pressure of carbon dioxide greater than 3 mmHg, and a change toward feeling upset or downhearted [Benzo et al. 2013]. Even some inclination on the part of a healthcare provider that the patient had an increased risk of dying within the next 12 months might trigger the need for initiating an end-of-life communication with the patient and the patient’s family.

Patient preference

Individuals with COPD consistently express that they would welcome an end-of-life care discussion with a clinician but these conversations rarely occur [Au et al. 2012]. While there have been many articles that have addressed communication or lack thereof regarding end-of-life care with patients with COPD [Au et al. 2012; Gardiner et al. 2009; Janssen et al. 2011; Knauft et al. 2005; Slort et al. 2011], these issues remain unaddressed. In one study, patients with COPD had a poor understanding of their disease, most were unaware of the progressive nature of the disease, and few were aware that COPD was fatal [Au et al. 2012]. Another article published in 2011 revealed that the quality of end-of-life communication in Dutch outpatients with clinically severe COPD was less than optimal [Gardiner et al. 2009]. Patients did rate their physicians’ communication skills on quality of life as being high, but communication about end of life was ranked low [Janssen et al. 2011]. A number of reviews, interviews and outcome assessments dealing with end-stage COPD have been published in the past few years. Physicians and patients alike are eager to move from the barriers to the facilitators, factors that are present when end-of-life care is done well.

Facilitators and challenges to quality end of life

Most patients want to be treated as an individual, not as a disease. Physicians have been trained to cure but not necessarily to comfort. The awareness of this paradox is integral to moving forward. Mahtani-Chugani and colleagues have suggested that even the use of the words ‘palliative care, degenerative disease and terminal illness’ are not neutral and could hinder communication [Mahtani-Chugani et al. 2010]. While patients often express willingness to be told the truth, they also note that early awareness of the fatal prognosis could have altered their life and prevented them from enjoying many activities [Mahtani-Chugani et al. 2010]. Effective communication, however, is paramount. Explaining the seriousness of the disease and presenting both curative and palliative interventions at the same time may be beneficial [Mahtani-Chugani et al. 2010]. Discussing both approaches, the ‘do everything’ to extend life versus do what is reasonable but forgo ineffective therapy that causes suffering, creates a balance that allows the patient and family to make a choice. Curtis and colleagues have added to the body of knowledge by trying to understand the interaction of hope and the patients’ desire for explicit prognostic information [Curtis et al. 2008]. Their research showed important variability in how patients with a terminal diagnosis dealt with the interaction of hope and reality. They also concluded that simply asking the patients and families how much information they wanted is not particularly useful.

Challenges in the prognosis of end-stage COPD have prevented many from receiving appropriate palliative care. While a variety of good instruments are already in place, and are being used, there is always room for improvement. Murphy and colleagues determined that the combination of the World Health Organization Performance Scale and the Early Warning Score provided an objective measure that was highly specific for death in patients with very severe COPD admitted to the hospital with AECOPD [Murphy et al. 2010]. Another new score, the extended Medical Research Council Dyspnea score, Eosinophilia, Consolidation, Acidemia and atrial Fibrillation (DECAF), a simple clinical prediction tool, performed stronger than other proposed prognostic scores in predicting hospital mortality within 30 days for those admitted with AECOPD [Steer et al. 2012]. Regardless of the score or instrument used, predicting end of life within 30 days gives 30 more days of palliative care than many of our patients are receiving now. If death does not occur within 30 days, the symptoms will still have been managed appropriately. We now have evidence that palliative care is beneficial. A study published in the New England Journal of Medicine relates the results of an intervention in newly diagnosed patients with NSCLC. Patients were randomly assigned to receive palliative care plus standard oncology care or standard oncology care alone. Patients in the palliative care plus oncology arm had a higher quality of life assessed with the Functional Assessment of Cancer Therapy – Lung score and actually lived longer than patients in the oncology only group (11.6 months versus 8.9 months, p = 0.02) [Temel et al. 2010]. While evidence-based research is hard to do at the end of life, it would be instructive to perform a study in patients with severe end-stage COPD. Regarding conversations, it would be easy to pass the issue of end-of-life care off to physicians and say that they are not doing their job, but communication is a two-way street. Unfortunately, when physicians do broach the subject, the response is often ‘I would rather concentrate on staying alive than talk about death’, or ‘I feel that talking about death can bring death closer’ [Benzo et al. 2013]. From the physician point of view, barriers to end-of-life conversations include ‘too little time during the appointment to discuss everything we should’ and ‘I worry that discussing end-of-life care will take away his/her hope.’ [Benzo et al. 2013]. The same study also mentioned patient-endorsed facilitators to end-of-life conversations. The top four facilitators from the patient’s point of view were as follows: I have had family or friends who have died; I trust my doctor; my doctor is very good at taking care of lung disease; and my doctor cares about me as a person [Benzo et al. 2013]. Knowing the barriers and facilitators leaves room for interventions and provides a measure of understanding for the disconnect.

Home-based palliative care services

A fairly new service for patients with end-stage COPD centers on the provision of customized home-based palliative care services. The Implementing a Palliative Care Trial in Advanced COPD Study (COPD IMPACT) [Horton et al. 2013] was designed as a single-center cohort longitudinal observational study to determine the feasibility of home-based palliative care for patients with advanced COPD. Even though the study enrolled fewer than expected, there were strengths to the assessment. A comprehensive home-based palliative care intervention was developed and customized to specifically address the needs of those living with COPD. The intervention was unique in that it integrated chronic disease management, education on disease prognosis and end-of-life decision making, along with concurrent proactive palliative care being provided in the patient’s home. While there were no significant changes pre and post study in HRQOL, caregiver burden, and symptom prevalence and occurrence, this novel study has opened doors for local programs to develop their own innovative palliative care services.

Gomes and colleagues recently published an overview of a meta-analysis done regarding the effectiveness and cost effectiveness of home palliative care services for adults with advanced illness and their caregivers [Gomes et al. 2013]. The objectives were to quantify the effectiveness and cost effectiveness of home palliative care services for adults with advanced illness and their caregivers; to examine the clinical effectiveness of home palliative care services on other outcomes such as symptom control, HRQOL, caregiver distress and satisfaction with care; to compare resource use and costs associated with these services; and to critically appraise and summarize current evidence on cost effectiveness. The results of the meta-analysis showed increased odds of dying at home and a small but statistically significant benefit of home palliative care services compared with usual care in reducing the symptom burden for patients. There was no noticeable effect on caregiver grief. Evidence of cost effectiveness (based on six studies) was inconclusive.

Better understanding, better care

Death should not come as a surprise to anyone, especially those diagnosed with an acute or chronic life-threatening disease. Medicine today has better diagnostics, better drugs, advanced surgical procedures and improved life support systems, but all of us have a limited lifespan. Ira Byock’s new book describes the quest to transform care through the end of life. The Best Care Possible is about how to make the best of what is often the worst time of life [Byock, 2012]. Byock advocates an interdisciplinary team approach to palliative care, integrating palliative aspects of care with critical care. Much like other clinicians, he espouses good communication. Palliative care conferences with the family, provision of accurate information, reviewing the completed advance directive, explaining the risks and benefits of treatment options and discussing the patient’s prognosis are all important components of the conference [Byock, 2006].

Conclusion

There is tremendous potential for the development of good end-of-life care practices. COPD is no longer an unknown diagnosis. COPD can now be prevented and managed, but the cure is still elusive. The importance of advanced care planning cannot be overstated. If physicians routinely discussed filling out an advanced directive with every patient, regardless of the diagnosis, there would be no hedging toward ‘taking away hope’. The act of making decisions about end-of-life care/choices could become more tolerable and accepted. A personal decision of this magnitude should be likened to the choices of getting married or having children, not something others can determine for you. Additionally, the patient with a diagnosis of COPD needs to be educated about the natural progression of the disease. Patients need to understand that interventions, like oxygen therapy, opioids and pulmonary rehabilitation, can actually provide a better quality of life and extended longevity [Enfield et al. 2010]. While referring to emphysema and COPD as ‘terminal’ may seem overly reactionary, it is a disease not to be taken lightly. Individuals with a better understanding of their illness, who adhere to and participate in their therapeutic regimen, and who have regular conversations with their physicians may just get the better care that they want and deserve.

Research is ongoing and awareness of the need for good palliative care when the diagnosis is COPD has never been greater. We have the knowledge and the desire to make end-of-life care more comfortable and more acceptable. With the option of home palliative care, in addition to homecare and hospice, there are more opportunities to help our patients with COPD breathe easier and have fewer bothersome symptoms. The mechanics are in place to improve end-of-life care for individuals with severe COPD. What is needed now is global implementation.