Linda is a 62-year-old nonsmoker who eats a vegetarian diet and walks 3 miles 3 days a week. Despite her healthy lifestyle, Linda developed a nonproductive cough in May 2012 that kept her up at night. The coughing became progressively worse, so she was evaluated by her primary care provider. A chest x-ray was performed that showed a suspicious right upper lobe mass. A positron emission tomography/computed tomography (PET/CT) test was performed that showed “a hypermetabolic (SUV max 27), 6-cm right upper lobe lung mass consistent with malignancy and abuts the mediastinal pleura.” Metastases to left upper lobe and right adrenal gland were also noted. A biopsy was positive for non–small cell lung carcinoma (NSCLC). Linda was referred to a local medical oncologist for evaluation and staging. She was diagnosed with T3 N2 M1/stage IV metastatic lung cancer.
At diagnosis Linda began carboplatin and pemetrexed chemotherapy for her locally advanced NSCLC and completed 3 cycles of chemotherapy. The medical oncologist suggested that Linda and her family meet with the hospice and palliative medicine team at the local hospital due to the advanced stage at diagnosis. She declined, citing strong faith and “the hope for a cure.” Linda wanted to “fight for her life” and thought that meeting with the hospice and palliative medicine team would be like “giving up the fight.” The physician planned to further discuss the issue of palliative medicine at a later date.
After cycle 3 of chemotherapy, Linda developed progressive shortness of breath. A CT scan of the chest revealed a moderate loculated pleural effusion and worsening mediastinal involvement of the tumor. Linda was admitted to the hospital for palliative radiation and thoracentesis to control her symptoms. Despite best supportive care efforts, Linda continued to become progressively weaker and eventually nonresponsive. She was referred to the local community hospice and passed away 3 days later, just 5 months after the initial diagnosis of lung cancer was made.
Hospice and Palliative Medicine: Is There a Difference?
In the first installment of this Conquering the Cancer Care Continuum series, Dr Lederman provided an overview of palliation in cancer. The article made clear the benefits of palliative care for cancer patients. The article and commentaries also illustrated that palliative services are underutilized for a number of reasons. Two key reasons patients and caregivers do not opt for palliative services are a lack of understanding of the benefits of palliative care and too few qualified practitioners to administer the services. Similar issues are seen with hospice. The Table outlines key concepts that differentiate palliative and hospice care.
Dame Cicely Saunders learned of surveys in the United Kingdom (UK) conducted during the 1950s that identified the appalling conditions in which patients were dying of cancer. Dame Saunders had experience as a wartime nurse in the 1940s and later in the 1950s caring for patients at the end of life.1 She identified the concept of “total pain,” which described one’s physical symptoms of pain, mental distress, and social and spiritual problems that may go unresolved at the end of life. Multidisciplinary teams of nurses, social workers, spiritual advisers, and physicians were drawn toward the ideas. Thus, the movement toward comprehensive symptom management and services to address basic and advanced needs at the end of life was conceived. The National Health Service of the UK opened the first of many hospice centers with the goals of alleviating patient suffering and providing end-of-life support.1,2
Hospice programs are comprehensively designed to provide physical, emotional, legal, and social support at the end of the cancer continuum. The multidisciplinary team of doctors, nurses, pharmacists, social workers, financial counselors, and clergy are equipped to address the specialized issues associated with end of life. Legal counsel in terms of advanced care directives, living wills, and durable power of attorney services are also offered.3
Hospice Care Options
Individuals within the United States who are entitled to Part A of Medicare services have access to the Medicare hospice benefit. The benefit allows individuals with a terminal illness (life expectancy of less than 6 months) the opportunity to forgo curative treatment for the incurable illness and to transition the goals of care toward symptom management. The benefit covers a comprehensive range of services. Even the most basic of services includes nursing and physician care, medical supplies, equipment, pain management, and emotional support. Many cancer patients have symptoms such as pain, nausea, dyspnea, or other side effects of the disease or treatment that need to be controlled. Eligible patients who agree to proceed with hospice will be referred to a hospice center. Four different levels of hospice care exist and can be used to address the spectrum of needs a patient may have. The levels include routine care, continuous care, inpatient care, and respite care.4
Routine care is generally the first step toward hospice. Routine care services include nurse and nursing assistant visits 1 to 3 times or more per week based on the patient’s needs. Physician and specialist visits for symptom management are also included. Medical equipment and counseling services are available as needed.4
Continuous care is the escalated level in which a nurse and/or a home health aide will provide care to the patients for a minimum of 8 and up to 24 hours per day. In addition to the routine care, nurses administer medications and treatments and support the patient and family until symptoms of pain, nausea, or emotional distress are under control.
Inpatient and respite care services are available to patients who require advanced services that the caregivers and continuous support staff are unable to provide. Inpatient hospice stays can range from days to weeks. According to the Centers for Medicare & Medicaid Services, general inpatient care is for pain control or symptom management that cannot be managed in other settings. Respite care may be provided only on an occasional basis and may not be reimbursed for more than 5 consecutive days at a time.4 Individuals who are the principal source of care for the patient may require a break for a variety of reasons but are primarily able to meet the patient’s needs. It is important to note that patients can transition through all levels of hospice care if initiated early. Understanding the levels of hospice and what the services entail is a first step toward the hospice transition.5
Benefits and Barriers to Hospice
Nurses and physicians must possess adequate knowledge about the benefits of and barriers to hospice, which includes pain management and supportive care. The lack of understanding of what hospice services entails prevents patients from opting for hospice services. In the United States, patients are not referred for hospice care until it is too late. As a result, patients will not receive the full benefit of all the services that are available. It is estimated that only 30% of patients are enrolled in hospice at the time of death, and most patients die within 7 days of admission to hospice. The median (50th percentile) length of service in 2010 was 19.7 days, a decrease from 21.1 days in 2009. The average length of service dropped to 67.4 days in 2010 from 69 days in 2009.6
Nurses and physicians must be adequately prepared to discuss the topic of hospice and administer hospice services. The services primarily consist of pain management and supportive care for nausea, vomiting, and respiratory or cardiac symptoms. However, major barriers to effective hospice management include a lack of qualified practitioners to administer services and a lack of education of pain management in academics.7,8
The 2010 Patient Protection and Affordable Care Act (PPACA) is legislation originally signed by President Barack Obama in 2010. The legislation initially included a provision by which voluntary end-of-life counseling would become a reimbursable service under Medicare. However, the provision was withdrawn. Recognizing the need to improve physician education, President Obama will provide governmental grants to teaching hospitals and institutions. The grants are to be directed toward additional medical training for hospice and palliative medicine programs.8,9
Early use of hospice and palliative services are supported by a randomized study by Temel et al.10 Investigators demonstrated a survival benefit in patients who received early palliative care versus those who did not (11.6 vs 8.9 months; P=.02). The 2.7-month improved overall survival is better than that achieved with most new therapies and illustrates the importance of the supportive care services that palliative medicine provides.10 In another study, Bakitas et al11 randomized terminally ill patients to a nurse-led intervention that focused on a multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n=161) versus usual care (n=161).11 Also, a recent study of individually tailored hospice supportive services from an interdisciplinary team are associated with improved health-related quality of life in a group of patients.12
It is clear that better patient and family education about hospice is necessary. Fear of dying and hope for a “cure” are cited as reasons why patients do not transition to hospice sooner,13 as evidenced in the case study with Linda. Therefore, it is recommended to allow patients a natural transition to first start with palliative services and follow with hospice. Optimally, the palliative care services should be initiated in patients with incurable cancer at the time of diagnosis or soon after.12,13
How Could Linda’s Course Have Been Changed?
Linda was a young lady with a terminal diagnosis. Her goals of care at diagnosis were to extend her life (“I want to fight”). This would be an opportunity for the physician or nurse to intervene and begin to counsel Linda regarding the natural history of the diagnosis and discuss short-term and long-term goals of care.
In general, healthcare providers can assist in the decision-making process by offering support and resources at each office visit. It is difficult to predict with relative certainty the life expectancy of patients with advanced illness or cancer, but in Linda’s case example, with the diagnosis of metastatic lung cancer, early discussion with Linda and her family about the benefits of hospice might have provided better quality of care and quality of life.
The decision to accept hospice services remains in the hands of the patient and the family or significant others. All patients should have access to hospice services when appropriate. Therefore, nurses and clinicians are integral to the education process. Palliative medicine and hospice services are well poised to address the needs of cancer patients across the continuum. Selecting hospice and/or palliative services as a treatment option can be distressing for the patient and family. Providers must highlight supportive research findings and include comprehensive education that highlights the benefits of the multidisciplinary services to the patient.
- Saunders C. The treatment of malignant disease. Prescribers J. 1964.
- Saunders C. The evolution of palliative care. J R Soc Med. 2001;94:430-432.
- Capasso J, Kim R, Perret D. Hospice for the terminally ill and end-of-life care. In: Vadivelu N, Kaye AD, Berger JM, eds. Essentials of Palliative Care. New York, NY: Springer; 2013:49-71.
- Department of Health & Human Services. Centers for Medicare & Medicaid Services. CMS 42 CFR § 418.302(b)(4). 2012.
- Jenq G, Tinetti ME. Changes in end-of-life care over the past decade: more not better. JAMA. 2013;309:489-490.
- National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. www.nhpco.org/hospice-statisticsresearch-press-room/facts-hospice-and-palliative-care. October 2012.
- Plaisance L, Logan C. Nursing students’ knowledge and attitudes regarding pain. Pain Manag Nurs. 2006;7:167-175.
- Bui T. Effectively training the hospice and palliative medicine physician workforce for improved end-of-life health care in the United States. Am J Hosp Palliat Care. 2012;29:417-420.
- US Senate. Patient Protection and Affordable Care Act. http://democrats.senate.gov/pdfs/reform/patient-protection-affordable-care-actas-passed.pdf. Accessed April 4, 2013.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363: 733-742.
- Bakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial. JAMA. 2009;302:741-749.
- Daly BJ, Douglas SL, Gunzler D, et al. Clinical trial of a supportive care team for patients with advanced cancer [published online ahead of print March 22, 2013]. J Pain Symptom Manage.
- Finestone AJ, Inderwies G. Death and dying in the US: the barriers to the benefits of palliative and hospice care. Clin Interv Aging. 2008;3:595-599.