Editor’s Note: Written by RRTs Paul Nuccio and Tim Nuccio, 2009’s “Give Them Comfort: Controlling COPD Symptoms at the End of Life” has consistently been one of RT magazine’s most popular articles, ranking in the top two in online views every month. Eight years later, the Nuccios have written a follow-up article that offers new recommendations for palliative care and reflects on the progress in end-of-life care for patients with COPD, a disease that is now the #3 cause of death in the United States. Part I is available here.
Currently listed as the third-ranked cause of death in the United States, chronic obstructive pulmonary disease (COPD) results in more than 120,000 people each year passing away as a result of this devastating disease.1 Given such alarming statistics, end-of-life (EOL) issues are clearly worthy of significant discussion. These discussions will be most effective if had throughout the progression of the disease as opposed to waiting until the end is imminent.
- COPD is a life-threatening lung disease that interferes with normal breathing; it is more than a “smoker’s cough.”
- More than 3 million people died of COPD in 2012, which is equal to 6% of all deaths globally that year.
- More than 90% of COPD deaths occur in low- and middle-income countries.
- The primary cause of COPD is tobacco smoke (through tobacco use or secondhand smoke).
- The disease now affects men and women almost equally, due in part to increased tobacco use among women in high-income countries.
- COPD is not curable, but treatment can slow the progress of the disease.
As described in a previous publication,3 the importance of controlling symptoms such as breathlessness and pain during those final days was emphasized in an effort to improve the quality of life, or perhaps the quality of death. This publication will focus on additional important issues such as place of death, honoring patient preferences, using a comfort care approach, and preparing the family for the dying process.
Place of Death and Patient Preference
The setting in which a patient will receive end-of-life care will not only influence patient and family satisfaction, it can also have a significant impact on symptom management and the ability to follow palliative care goals that have already been established. Deciding to die at home is not necessarily a simple process. According to Wilson et al,4 “until the place of EOL care becomes the focus of attention over place of death, major EOL issues such as inadequately supported home-based dying will not be addressed.” The results of this survey are shown in Table 1.
Since many deaths can be anticipated, particularly from chronic illnesses such as COPD, we have the ability to plan ahead, thus increasing the opportunities to honor a patient’s preferences regarding his or her final days. Given that it appears adults prefer to be at home at the end of life, more energy needs to be focused on what is necessary in order to make this a reality during this very difficult physical and highly emotional time.
Despite the high preference for dying at home, less than 25% of United States patients actually die in their home.5 Some have found that referring patients earlier for palliative care has helped to reduce the number of deaths that took place in the hospital and increased the number of times where the patient’s desires could actually be carried out.6
Using a Comfort Care Approach
The thought of death can certainly be frightening for everyone, but particularly for those who suffer from a chronic disease. Most people, when asked, hope for death to come peacefully, dignified, and pain-free. Some have referred to this as a “good death”. Since there is little information available as to what a good death actually looks like, Steinhauser et al undertook a study using a focus group approach with interviews of physicians, patients, and other stakeholders to evaluate the various aspects of the dying process.7
The participants identified six components of a “good death”:8
- Pain & symptom management
- Clear decision making
- Preparation for death
- Contributing to others
- Affirmation of the whole person
It is no surprise that the first attribute listed above is pain and symptom management. Allowing patients to be a part of the decision-making process when discussing pain management is very important. In the focus group discussions mentioned previously, one patient stated “This is my medical problem. Sometimes I don’t want to stay on the rigid schedule, and he [the physician] would say, ‘I would like for you to stay on that, but you are the manager of your ship. You decide how fast you want to paddle, if you want to go backwards, sideways, or make a 360o turn.’”7
When considering pain and symptom management as individuals are approaching their end of life, it is important to consider potential drug-drug interactions and associated adverse effects.8 Once a care plan is developed, drugs that a patient has been taking that are not part of the care plan should be considered for discontinuation. These decisions should be made by a skilled clinician so as not to needlessly create an adverse impact on the quality of life in the final weeks or days.
Decisions regarding the route of administration for medications must be made on a case-by-case basis. Since taking medications orally may not be feasible, non-oral routes of administration must be considered:
- Gastrostomy tube
- Nasal & oral transmucosal
In managing specific symptoms, care must be taken to consider potential side effects of the medications or treatments and weigh the benefits against these. There are both pharmacological and non-pharmacological methods of symptom management. Unfortunately, many healthcare providers are hesitant to manage symptoms proactively because of concerns about potential side effects, at least in regards to pharmacological interventions. Nearly all patients suffering from advanced COPD will experience dyspnea, leading significantly to a declined quality of life. Swinburn et al suggest that the use of exercise training and oxygen therapy may be beneficial by helping to reduce the patient’s ventilation demands.10
The use of oxygen therapy in severely hypoxic patients who have COPD is well established. However, as a treatment for dyspnea it should only be used when indicated and when it demonstrates benefit as the evidence supporting its use is lacking.11 The use of opioids and anxiolytics have been shown to reduce the perception of dyspnea. A meta-analysis published in 2002 showed a statistically significant benefit of both parenteral and oral opioids on reducing dyspnea. There was, however, little to no evidence showing any benefit from nebulized opioids.12
Non-pharmacological approaches to symptom management may play a significant role for the end-of-life COPD patient. Pulmonary rehabilitation may be beneficial, but only if prescribed earlier in the disease process.13 Exercise ability will be reduced as the disease progresses and the conditioning, breathing techniques, and relaxation exercises learned while attending pulmonary rehabilitation may prove to be helpful. The role of relaxation exercises should not be marginalized. It is well known that anxiety leads to increased dyspnea, which leads to more anxiety.14
Many patients with advanced disease find that they benefit from holding a small fan in their face. There is significant anecdotal evidence that has shown this to be true. In addition, Schwartzstein and colleagues demonstrated in a 1987 study that “a flow of cold air directed against the cheek reduces breathlessness induced by an inspiratory resistive load and hypercapnia without causing a significant reduction in total ventilation.”15
Preparing the Patient and Family for the Dying Process
Honoring a patient’s wishes for their end-of-life care is one of the most important things we can do for a patient with chronic illness. This requires careful advanced care planning between the healthcare providers and the patient and his or her family. Unfortunately “inadequate communication is one of the greatest barriers to the provision of good end of life care.”16 Without proper planning and communication, patients will be unable to be in control of the decision-making process. It is “impossible for healthcare professionals to predict patients’ preferences without advance care planning discussions” according to Spathis and Booth 2008.17
Often times the needs of family member of those suffering with end-stage disease are ignored or simply not addressed. As mentioned previously, the location of their loved ones final days can play an important role as to whether or not the patient’s needs and the family member’s needs are addressed. According to a paper published in JAMA 2004, a more favorable dying experience was more likely to take place in the home environment with hospice services, as opposed to in a hospital or other institution.18 In this survey, family members reported that not enough emotional support was provided for them or their loved one. Many commented on the lack of physician communication regarding medical decision-making.
The easy solution would be to improve access to home hospice services for all advanced disease patients, although this approach could be quite complicated. According to the JAMA paper, “simply increasing access to hospice services may not adequately improve end-of-life care in the United States, given that qualification for Medicare Hospice Benefit requires that two physicians certify a six-month prognosis, and accurately prognosticating life expectancy for persons dying of diseases other than cancer is difficult.”18 Much work needs to be done if we desire to improve the care we provide to our patients and families as they progress through the challenges of terminal diseases. Such work will require “a public health approach that uses sustained and multifaceted interventions to improve end-of-life care in the United States.”19 RT
Tim Nuccio, RRT is a staff therapist at Beth Israel Deaconess Medical Center, Boston. Paul Nuccio, MS, RRT, FAARC is the director of pulmonary services at Brigham and Women’s Hospital, Boston. For further information, contact editor@RTmagazine.com
- Minino AM, Murphy SL, Xu J, et al. Natl Vital Stat Rep. 2011 Dec;59(10):1-126.
- Nuccio T & Nuccio P. Give Them Comfort: Controlling COPD Symptoms at the End of Life. http://www.rtmagazine.com/2009/02/give-them-comfort-controlling-copd-symptoms-at-the-end-of-life.
- Wilson DM, Cohen J, Deliens L, et al. The Preferred Place of Last Days: Results of a Representative Population-Based Public Survey. J Palliat Med 2013; 16:502-508.
- Facts on dying, 2004 http://www.chcr.brown.edu/dying/2001DATA.HTM (Accessed on August 18, 2016).
- Poulose JV, Do YK, Neo PS. Association between referral-to-death interval and location of death of patients referred to a hospital-based specialist palliative care service. J Pain Symptom Manage 2013; 46:173-181.
- Steinhauser KE, Clipp EC, McNeilly M, et al. In Search of a Good Death: Observations of Patients, Families, and Providers. Ann Intern Med 2000;132:825-832.
- Morgan NA, Rowett D, Currow DC. Analysis of drug interactions at the end of life. BMJ Support Palliat Care 2015;5:281-286.
- Harlos M. The terminal phase. In: Oxford Textbook of Palliative Medicine, 4th, Hanks G, Cherny NA, et al. (Eds), Oxford University Press, Oxford 2010.
- Swinburn CR, Wakefield JM, Jones PW. Relationship between ventilation and breathlessness during exercise in chronic obstructive airways disease is not altered by prevention of hypoxaemia. Clin Sci 1984;67:515-519.
- NOTT group. Continuous or nocturnal oxygen therapy in hypoxaemic chronic obstructive lung disease: a clinical trial. Ann Intern Med 1980;93:391-398.
- Jennings AL, Davies AN, Higgins JPT, et al. A systematic review of the use of opioids in the management of dyspnoea. Thorax 2002;57:934-944.
- Gagnon L. End-stage COPD patients don’t realize benefits of pulmonary rehabilitation. Medscape May 22, 2008.
- Bailey P. The dyspnea-anxiety-dyspnea cycle: COPD patients’ stories of breathlessness. Qual Health Res 2004;14:760-768.
- Schwartzstein RM, Lahive K, Pope A, et al. Cold facial stimulation reduces breathlessness induced in normal subjects. Am Rev Respir Dis 1987;136:58-61.
- Curtis J, Engelberg R, Wenrich M, et al. Communication about palliative care for patients with chronic obstructive pulmonary disease. J Palliat Care 2005;21:157-164.
- Spathis A & Booth S. End of life care in chronic obstructive pulmonary disease: in search of a good death. Int J Chron Obstruct Pulmon Dis 2008;3:1:11-29.
- Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of care. JAMA 2004;291:1:88-93.
- Singer PA, Bowman KW. Quality care at the end of life. BMJ 2002;324:1291-1292.