end stages of copd what happens to your body
Palliative and end-of-life intendance for patients with astringent COPD
Abstract
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality worldwide. For many patients, maximal therapy for COPD produces but modest or incomplete relief of disabling symptoms and these symptoms result in a significantly reduced quality of life.
Despite the high morbidity and mortality associated with severe COPD, many patients receive inadequate palliative care. There are several reasons for this. First, patient–physician communication about palliative and terminate-of-life care is infrequent and often of poor quality. Secondly, the uncertainty in predicting prognosis for patients with COPD makes communication about cease-of-life care more difficult. Consequently, patients and their families frequently do non sympathize that severe COPD is often a progressive and terminal disease.
The purpose of the present review is to summarise recent research regarding palliative and terminate-of-life intendance for patients with COPD. Recent studies provide insight and guidance into ways to improve advice about end-of-life care and thereby improve the quality of palliative and cease-of-life intendance the patients receive. Two areas that may influence the quality of care are also highlighted: 1) the part of anxiety and depression, common problems for patients with COPD; and two) the importance of advance care planning.
Improving communication represents an of import opportunity for the comeback of the quality of palliative and stop-of-life care received by these patients.
- Chronic bronchitis
- chronic obstructive pulmonary affliction
- communication
- emphysema
- finish-of-life intendance
- palliative care
Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of mortality and the 12th leading cause of inability worldwide 1, 2. By the year 2020, COPD will exist the tertiary leading cause of bloodshed and the fifth leading crusade of disability worldwide 3–5. For many patients, maximal therapy for COPD produces only pocket-size relief of symptoms, leaving patients with significantly reduced wellness-related quality of life. Many patients with COPD receive inadequate palliative care. The purpose of the nowadays review is to examine bug in the delivery of high-quality palliative intendance to patients with astringent COPD and to place means in which to accost these problems. Since other articles in the series take discussed treatment of dyspnoea and other symptoms and improving quality of life, the current review volition focus on communication about palliative and end-of-life care.
THE DEFINITION OF PALLIATIVE AND END-OF-LIFE Care
The goal of palliative care is to preclude and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the demand for other therapies half dozen. The World Wellness Organization adopted the following definition of palliative care: "Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, admission to information and option" 7. As such, palliative care expands traditional treatment goals to include: enhancing quality of life; helping with medical decision making and identifying the goals of care; addressing the needs of family and other informal caregivers; and providing opportunities for personal growth 6. In dissimilarity, the term "end-of-life intendance" ordinarily refers to care concerning the final phase of life and focuses on care of the dying person and their family. The time flow for end-of-life care is arbitrary and should be considered variable depending on the patient's trajectory of illness 8, 9. Using these definitions, palliative care includes end-of-life care, but is broader and also includes care focused on improving quality of life and minimising symptoms before the cease-of-life catamenia, every bit depicted in figure 1⇓. Although finish-of-life intendance usually refers to care in the terminal months, weeks or days, there is growing evidence that communication with patients and families about their preferences for terminate-of-life care should occur early in the course of a chronic life-limiting illness, in order to facilitate loftier-quality palliative and stop-of-life care. The present review will summarise some of this evidence, peculiarly as it pertains to patients with astringent COPD.
POOR PALLIATIVE CARE IN COPD AND THE LINK TO POOR COMMUNICATION
The Study to Sympathize Prognosis and Preferences for Outcomes and Treatments (Support) enrolled seriously ill, hospitalised patients in one of five hospitals in the USA with i of nine life-limiting illnesses, including COPD 10. Compared with patients with lung cancer, patients with COPD were much more than likely to die in the intensive care unit (ICU), on mechanical ventilation, and with dyspnoea 11. These differences occurred despite well-nigh patients with COPD preferring handling focused on comfort rather than on prolonging life. In fact, Support establish that patients with lung cancer and patients with COPD were equally probable to prefer not to be intubated and not to receive cardiopulmonary resuscitation (CPR), yet patients with COPD were much more likely to receive these therapies eleven. A study in the Uk as well found that patients with COPD are much less likely to die at dwelling house and to receive palliative care services than patients with lung cancer 12. Additional studies have documented the poor quality of palliative care and significant burden of symptoms among patients with COPD 13. Healthcare for these patients is often initiated in response to astute exacerbations rather than being initiated proactively based on a previously developed plan for managing their disease 14. A contempo study of patients with COPD or lung cancer in the US Veterans Affairs Wellness System besides constitute that patients with COPD were much more than likely to be admitted to an ICU, and take greater lengths of stay in the ICU during their last hospitalisation, than patients with lung cancer. In the same study, significant geographic variation in ICU utilisation was found for patients with COPD 15. Although variation in care may exist influenced by many factors including availability, access and reimbursement issues, such geographic variation suggests a lack of consensus concerning the best arroyo to palliative and stop-of-life intendance for patients with COPD. In summary, at that place are important opportunities for research and quality improvement if better palliative and terminate-of-life care is to exist provided for patients with astringent COPD.
CHALLENGES IN PROGNOSTICATION FOR INDIVIDUALS WITH COPD
In COPD, it may be difficult to identify those patients who are probable to die within half-dozen months. The prognostic models used in Back up, which were based on the Astute Physiology and Chronic Wellness Evaluation II, documented this difficulty. These models showed that, at 5 days prior to death, patients with lung cancer were predicted to have <x% chance of surviving for 6 months, while patients with COPD were predicted to have >50% chance xi. Contempo efforts to identify disease-specific prognostic models for patients with COPD do amend prognostic accuracy, but do non predict individual short-term survival equally well every bit can exist done for many patients with cancer 16–xviii.
Therefore, uncertainty concerning prognosis plays a more prominent role in discussions of prognosis and end-of-life care for patients with COPD than for patients with cancer. As physicians take difficulty discussing prognosis in the setting of dubiety 19, it is non surprising that they also struggle with knowing when to raise issues well-nigh stop-of-life intendance. Nevertheless, it remains the responsibleness of physicians caring for patients with severe COPD to educate them nigh terminate-of-life intendance and to ensure that they receive care consistent with their informed preferences for care at the finish of life.
Despite the doubtfulness, a profile emerges of the types of patients at high risk of mortality or morbidity over the next 6 months. Physicians should be encouraged to identify patients with COPD for whom discussions about treatment preferences or end-of-life intendance are especially important 20. This profile could include an assessment of: forced expiratory book in one 2nd (FEV1) <30% predicted; oxygen dependence; one or more infirmary admissions in the previous year for an astute exacerbation of COPD; left heart failure or other comorbidities; weight loss or cachexia; decreased functional status; increasing dependence on others; and historic period >lxx yrs (tabular array 1⇓). The presence of two or more of these prognostic indicators should be a reason for such discussions. Multiple criteria increase the relevance and urgency for the discussion, as they increment the adventure for a life-threatening exacerbation and for receiving care at the end of life that is not consistent with their informed treatment preferences.
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Table 1—
Characteristics that should trigger a discussion on preferences about end-of-life intendance
It is besides important that clinicians understand patient preferences for end-of-life intendance and provide them with an opportunity to discuss these issues. About patients with life-limiting illness prefer to talk over their preferences for end-of-life care relatively early in the form of their illness 21, equally these discussions are less stressful when the patient is feeling relatively well. Although most patients with COPD will prefer a trial of mechanical ventilation for astute respiratory failure, raising these problems in advance of the requirement makes it easier to revisit these discussions when patients are unwell 21, 22.
Electric current STATE OF Advice ABOUT End-OF-LIFE CARE
Studies take shown that merely a minority of patients with moderate-to-astringent COPD have discussed handling preferences and end-of-life care problems with their physicians 23–25 and near believe that their physicians do not know their preferences for stop-of-life intendance 24, 25. The current author'south grouping recently found that only a tertiary of patients with oxygen-dependent COPD had discussed finish-of-life care with their physicians and <25% of physicians had discussed some important aspects of end-of-life intendance with their patients, including talking about how long the patient might live and what dying might exist like for the patient and the family 23. The study also examined the items that patients with COPD rated as being performed most poorly, which included talking well-nigh prognosis. Therefore, improved communication regarding end-of-life care, prognosis and dying needs to be targeted.
A recent report by McNeely et al. 26 examined the perspectives of Canadian respirologists on communication almost terminate-of-life intendance for patients with COPD. When respirologists discussed mechanical ventilation for end-phase COPD, the discussions occurred belatedly in the disease trajectory, about commonly taking place in the ICU, with only 23% occurring in the dispensary or role 26. It was found that 84% of physicians waited until dyspnoea was severe and 75% waited until the FEV1 was <30% pred. A survey of 214 general practitioners in the Great britain plant that, although 82% felt that general practitioners should hash out the prognosis with patients with COPD, only 41% reported "often" or "ever" discussing prognosis with these patients 27. Furthermore, ii thirds of these physicians who reported infrequently discussing cease-of-life care reported feeling inadequately prepared to have such discussions. These studies advise that communication about cease-of-life care is an important area for improvement in the care of patients with COPD.
Management FOR IMPROVING COMMUNICATION ABOUT PROGNOSIS AND About Finish-OF-LIFE Care
There are a number of studies that provide some specific direction for physicians in their communication about end-of-life care for patients with severe COPD. One qualitative study compared patients with astringent COPD to patients with metastatic cancer or avant-garde AIDS, noting that patients with COPD were more probable to express concern about the lack of education that they received about their disease 28. Patients with COPD wanted more data in the post-obit five specific areas: diagnosis and disease process, handling, prognosis, what dying might be similar, and advance care planning (table 2⇓).
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Table 2—
Components of end-of-life care that patients would like to hash out with their medico 28
A qualitative study of patients with severe COPD in the Uk also showed that most, but non all patients wanted more than information near their prognosis 29. In a survey of older patients with serious illnesses and express life expectancy, just over one-half (56%) of participants with COPD wanted to know their life expectancy 30. Ofttimes, family members may desire this data even when patients do not 31. Therefore, it is of import to determine how much information nearly prognosis patients and family unit members want.
Adept recommendations suggest numeric expressions of adventure (e.g. "viii out of x people will accept side-effects from this drug") by and large lead to better comprehension than do qualitative expressions of hazard (e.g. "this drug is very likely to crusade side-effects") 32. Moreover, since prognostic information applies to outcomes of groups of patients, experts recommend that prognostic data be phrased in terms of outcomes for populations rather than in terms of private outcomes (e.g. "out of a group of 100 patients like your mother, I would expect about 10 to survive this") 33. In addition, because some individuals do not wish to receive prognostic information, experts recommend the "inquire-tell-ask" approach to discussing prognosis 34–36. For this arroyo, physicians outset seek permission to discuss prognosis prior to doing so and after enquire patients and families their understanding of the prognosis to ensure comprehension. Table iii⇓ summarises some of these recommendations for discussing prognosis.
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Tabular array 3—
Tips for talking well-nigh end-of-life intendance, prognosis and advance care planning
Some other surface area of communication that was rated equally poorly performed by patients with severe COPD was asking about the patients' spiritual or religious beliefs 23. Several studies suggest that the majority of patients want to discuss spiritual or religious problems with their physicians, although some patients do not have a strong preference and others have a preference to non accept such discussions with physicians 37–39. Studies from Europe suggest that physicians' religion may be an important determinant of the intendance patients receive 40, 41. Several reviews suggest approaches that physicians tin can take in determining whether patients want to discuss the patient'south religion and spirituality and having these discussions with patients 42, 43, although empirical data almost which specific techniques better patient experience are limited.
OVERCOMING THE BARRIERS TO COMMUNICATION ABOUT Stop-OF-LIFE CARE FOR PATIENTS WITH COPD
An important step towards improving communication nigh terminate-of-life care is to identify the barriers to this communication and implement strategies to overcome them. A recent study of patients with oxygen-dependent COPD examined the barriers to communication about end-of-life care and noted them to be many, diverse and patient-specific 22. Although fifteen barriers were identified, only 2 were endorsed by >50% of patients, suggesting that an individualised process is required.
The two near commonly mentioned barriers were: "I'd rather concentrate on staying live than talk well-nigh death" and "I'g non sure which physician will be taking care of me if I get very sick." The sometime suggests the need for skill in talking about a difficult subject with patients who would rather non discuss it. Although many patients do not wish to hash out dying and decease, these same patients often have strong opinions almost CPR and mechanical ventilation 44. Amongst patients in SUPPORT who did not want to discuss CPR, 25% did not want to accept CPR and among those who did non desire to hash out mechanical ventilation, lxxx% did non desire to accept prolonged mechanical ventilation. Therefore, it may be of import to have these discussions even with patients who are reluctant to do and so. It may be helpful in these situations to acknowledge that discussions almost dying can be difficult, simply are nonetheless important for patients, families and physicians to undertake, and may provide an opportunity to decrease the burden of decision making on family unit members. Information technology can also be useful to explicitly land that such a give-and-take will not diminish the physicians' focus on finding therapies to improve survival or quality of life, as some patients worry that such a give-and-take might cause a dr. to "requite up" on them 45. Another useful tool for raising these discussions may be to frame them in the context of "hoping for the best, while preparing for the worst" 46.
The other most common barrier, "I'chiliad non sure which physician volition be taking intendance of me if I become very sick," suggests that patients may fear abandonment past their physicians at the terminate of life and that discussions of continuity of care betwixt physicians and patients may be an important component of discussions virtually dying and death. In a qualitative study of patients with severe COPD, metastatic cancer or advanced AIDS, concerns nearly continuity of care and abandonment emerged as of import for patients with each of these diseases 21, 47.
The most common physician-endorsed barriers to communication nearly terminate-of-life care 22 include: "In that location is also little fourth dimension during our appointments to talk over everything nosotros should"; "I worry that discussing end-of-life care volition have away his/her hope"; and "The patient is not ready to talk about the care due south/he wants if s/he gets sick." These barriers suggest that interventions also demand to target physicians and accost systems-level issues, such every bit ensuring adequate time for discussions almost terminate-of-life intendance. Some patients prefer a direct approach to discussing prognosis, while others adopt a more than indirect approach 31. There is no relationship betwixt the number of barriers endorsed by patients and the number endorsed by their physicians 22. This lack of an association suggests that encouraging interventions may be more successful if they target both patients and physicians.
THE Office OF DEPRESSION AND HEALTH Status IN Advice ABOUT END-OF-LIFE Intendance
Although anxiety and low are common in COPD, they are not well recognised or treated 48–52. In a contempo study, simply a 3rd of patients with COPD and clinically significant depression or anxiety were beingness treated and just half of those with severe depression or anxiety were beingness treated 53. Antidepressants tin significantly improve mood amidst patients with COPD and depression 54. Furthermore, in patients with COPD and depression, antidepressants can besides decrease ratings of dyspnoea and other concrete symptoms 54.
Anxiety and depression may modify patients' treatment preferences concerning cease-of-life care. Patients with COPD and a higher burden of depressive symptoms have a stronger preference against CPR 55. This clan is similar to findings of two prior investigations, one from Back up 10 and one by Blank et al. 56, which assessed preferences for CPR, but not specifically for patients with COPD. Patients with depression are more likely to alter their treatment preferences afterward depression resolves 57. They besides charge per unit the quality of patient–physician communication about end-of-life care significantly lower than those without depression 23. It is unclear whether this finding reflects an effect of depression on patients' ratings of the quality of communication or whether the quality of advice is negatively influenced past depression simply, regardless of the reason, it is important for physicians to exist aware of this relationship between depression and quality of communication about end-of-life intendance. Simply put, the presence of anxiety and low may influence the patient's ability to understand the impact of decisions that they make and therefore, if possible, these symptoms should be treated prior to end-of-life determination making.
Another noteworthy finding nigh treatment preferences was that health status, as measured by the Saint George'due south Respiratory Questionnaire, was not associated with end-of-life handling preferences in a population of patients with astringent COPD 55. These data confirm and extend the results of two prior studies performed in elderly outpatients without severe comorbidities 58 and in seriously ill, hospitalised patients with several different master diagnoses 59. Healthcare providers should non presume that poorer health status is necessarily associated with a higher likelihood of refusing life-sustaining treatment. Since physicians consistently underestimate patients' quality of life compared with the patients' own assessments 60, 61 and since there is evidence that physicians' estimates of patients' treatment preferences are influenced by the physicians' estimates of patients' quality of life 62, it is important that physicians caring for patients with severe COPD examine their own assumptions and directly obtain treatment preferences from patients. A recent survey from Europe showed that physicians and nurses placed more value on quality of life and less value on prolonging life than patients or family unit members 63. Clinicians should proceed this difference in mind and avoid inappropriately imposing their values on patients and their families.
THE ROLE OF Accelerate DIRECTIVES AND Advance Intendance PLANNING IN PATIENTS WITH SEVERE COPD
There has been considerable dissatisfaction with the lack of effects of advance directives on end-of-life care 64. A number of studies suggest that advance directives do non influence the treatments that patients receive 65–67 and practice not change end-of-life decision making 68–70. It is articulate that advance directives in the absence of good communication about stop-of-life care practice not improve the quality of terminate-of-life intendance. However, in the context of good communication between patients, families and physicians, advance directives may be an important component to end-of-life care. In addition, some studies propose that the presence of advance directives are associated with decreased levels of stress and increased ratings of the quality of care amidst family members of dying patients 71, 72.
Advance directives may be especially useful amid patients with COPD because of their likely trajectory of illness, with unpredictable exacerbations that may make patients suddenly critically sick 8. In addition, some patients with COPD have strong feelings nigh the situations in which they would want to forego CPR or, particularly relevant for COPD, mechanical ventilation for astute respiratory failure. Other authors accept reported on the evolution of COPD-specific advance directives for this purpose, although there have not been studies showing that these accelerate directives meliorate the quality of terminate-of-life care 73, 74. Notwithstanding, accelerate directives are a topic that should be discussed with all patients with moderate or severe COPD as role of advance care planning and other aspects of communication nigh finish-of-life care. For patients who have experienced noninvasive or invasive ventilation in the past, physicians have the opportunity to use patients' prior experiences as a reference indicate for discussing potential future episodes of acute respiratory failure and those circumstances under which they would not want these types of ventilation. Patients' prior experiences with life support, or with relatives or friends who have required life support, tin be important facilitators to patient–md advice most treatment preferences and end-of-life care 22.
Intendance OF THE PATIENT DYING FROM COPD AND THE ROLE OF THE HOSPICE
Some patients with COPD will die from lung cancer or cardiovascular illness 2, 75, whereas others die from progressive respiratory dysfunction, or a systemic complication of it 14. Physicians caring for patients dying with severe COPD may demand to consider the value of treating their comorbidities in the setting of advanced and terminal COPD. For example, indications for treatment of hypertension may change as COPD advances. Physicians should consider physiological changes as patients become progressively closer to death and reassess the risks and benefits of the treatments for these comorbidities 76.
Improvements in care of the dying have been largely confined to patients in hospice care and specifically to patients with cancer 77. Patients dying of progressive COPD are less likely to be offered the opportunity to benefit from hospice services when compared with patients with cancer 12. The illness trajectory amidst patients with COPD is more likely to be a gradual tedious turn down interspersed with unpredictable astute exacerbations, which are often followed by an comeback back towards, but not quite reaching, their pre-exacerbation baseline ix. This trajectory does non fit the traditional hospice model well and may be part of the reason that patients with COPD are less likely to receive hospice and palliative intendance services. Nevertheless, agreement this trajectory and discussing it with patients and their families may offering an opportunity to adapt hospice and palliative intendance services to meet the needs of these patients and their families eight. Accomplishing this goal represents ane of the most important challenges to improving end-of-life care for patients with severe COPD.
Patients with COPD are at take a chance for respiratory failure and recent advances in the apply of noninvasive ventilation heighten questions about the use of this technology in the palliative care setting. The use of noninvasive ventilation for patients who choose to forego invasive mechanical ventilation is relatively common in Europe, with approximately one tertiary of patients who receive end-of-life intendance in the hospital receiving noninvasive ventilation as the about aggressive class of ventilation earlier death 78. A recent Society of Disquisitional Care Medicine Task Forcefulness provided a systematic arroyo to considering noninvasive ventilation in palliative care settings, and concluded that although noninvasive ventilation may exist appropriate as a form of life support for patients who choose to forego invasive ventilation, current literature does not support the routine use of noninvasive ventilation for the sole purpose of palliation of symptoms 79. Furthermore, most hospice settings do not take familiarity with noninvasive ventilation and this lack of familiarity increases the take chances for damage and decreases the chance of benefit from noninvasive ventilation.
CONCLUSIONS
In summary, palliative care is an important component in the treatment of patients with severe chronic obstructive pulmonary disease. There is strong testify to suggest that patients with chronic obstructive pulmonary disease receive poor-quality palliative care compared with patients with cancer 11, 12, 14. One reason these patients may receive poor-quality palliative care is that patient–physician communication almost end-of-life care is unlikely to occur, or but occurs late in the illness 23–25. The quality of this communication is likely to be poor and current models for training physicians in communication nearly cease-of-life care are inadequate 23, 27, eighty. Understanding the barriers to this communication may be an important stride to improving it 22. Furthermore, recognising the importance of anxiety and depression will also be important when discussing palliative and cease-of-life care 55. Advance directives and good advance care planning offer an opportunity for improving the quality of palliative care received by patients with severe chronic obstructive pulmonary disease. Finally, hospice and palliative care services correspond an important opportunity for improving end-of-life care, but clinicians caring for patients with chronic obstructive pulmonary disease must find more effective ways to apply these services.
Statement of interest
None declared.
Footnotes
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Previous articles in this series: No. one: Viegi Thou, Pistelli F, Sherill DL, Maio S, Baldacci S, Carrozzi L. Definition, epidemiology and natural history of COPD. Eur Respir J 2007; 30: 993–1013. No. ii: Fabbri LM, Luppi F, Beghé B, Rabe KF. Complex chronic comorbidities of COPD. Eur Respir J 2008; 31: 204–212. No. 3: Colina K, Geist R, Goldstein RS, Lacasse Y. Anxiety and depression in cease-stage COPD. Eur Respir J 2008; 31: 667–677. No. iv: Albert P, Calverley PMA. Drugs (including oxygen) in severe COPD. Eur Respir J 2008; 31: 1114–1124. No. v: Clini EM, Ambrosino N. Nonpharmacological treatment and relief of symptoms in COPD. Eur Respir J 2008; 32: 218–228.
- Received September 24, 2007.
- Accepted October 20, 2007.
- © ERS Journals Ltd
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Source: https://erj.ersjournals.com/content/32/3/796
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