Palliative Care and End-of-Life Care

Mr. S, a 67 year old male, was diagnosed with locally advanced non-small cell lung cancer (NSCLC). His cancer involved his right upper lobe and supraclavicular lymph nodes. His medical history was significant for chronic obstructive pulmonary disease (COPD) and limited functional capacity. Along with type and stage of cancer, a performance status scale is used to help determine appropriate treatment. One such scale, the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale is commonly used to assess how a patients disease is progressing and how the disease affects the daily living abilities of the patient (see Figure 1).

Mr. S was ambulatory and capable of all self-care activities, but was unable to carry out any work activities (ECOG, grade 2). Considering disease, stage, and performance status, the oncologist offered Mr. S primary treatment with concurrent chemotherapy and radiation therapy, followed by adjuvant chemotherapy. The term adjuvant refers to therapy following the primary treatment modality. Adjuvant therapy is given to target possible minimal remaining disease in patients at high risk for recurrence.

Mr. S's treatment was interrupted twice by hospitalizations for fever, chills, and pneumonia. Also, during the time he was being treated, he became oxygen dependent and began having pain in his right shoulder. When his records were reviewed, it was noted that his wife was calling the oncologist and/or primary care provider with questions one to two times weekly.

Mr. S completed 5 out of 7 planned chemotherapy treatments and received all of his planned radiation treatment, spread over a longer period of time than planned, and one adjuvant chemotherapy treatment. At that time an interval CT scan showed stable to improved disease on the original site on the right, but unfortunately, a new nodule on the left. This finding was consistent with progression to metastatic disease, Stage IV, prompting switching to a different chemotherapy regimen, second line treatment, and a change in goal of treatment from prolongation of life to comfort. After two treatments with second line therapy, further CT follow up showed stable disease on the right and a smaller nodule on the left. When he returned for his next treatment, however, he still complained of increasing persistent right shoulder pain. Since recent imaging did not show that his pain was due to cancer, it was thought that it was caused by degenerative joint disease (DJD). He was prescribed morphine and ibuprofen. In addition orthopedic and pain clinic consults were placed.

A few days later, in spite of taking the prescribed pain medications and using additional over-the-counter topical ointments, Mr. S described his pain as excruciating and his wife brought him to the emergency room. In addition to his worsening right shoulder pain, he began experiencing numbness and weakness in his right forearm and hand. He was unable to grip anything with that hand, limiting his ability to completely care for himself (ECOG, grade 3). He was admitted to the hospital for pain control and further work up. After being placed on a morphine PCA pump with continuous and PCA dosing, his pain was controlled. An MRI was ordered.

Unfortunately, the MRI showed an enlarging lung mass that involved the lower most nerve roots of the right brachial plexus. Nerve entrapment from tumor growth was causing his pain and loss of function. This meant that his disease had progressed on second-line chemotherapy treatment. Limited further options existed. Administering any other chemotherapy had little possibility of benefit and he had maximized the amount of radiation that he could receive. Mrs. S. tearfully stated that she and her husband never spoke about the possibility of treatment failure and dying. "We just never mentioned it to each other. I don't think we wanted to think about it." Faced with the diagnosis of terminal illness, she and her husband were overwhelmed.

Their goals of treatment changed. Rather than focusing on treatment of the tumor, their focus shifted to controlling pain and going home. However, when Mr. S. was placed back on oral medications, his pain became intolerable again.

Since the hospital had a palliative care unit, Mr. S was transferred there for pain control and much needed emotional and spiritual support for both him and his wife. The plan was established for Mr. S. to go home with hospice care once his pain was brought under better control.

At this point you might be asking some questions. What is the difference between palliative care and hospice care? At what point in time is it appropriate to refer patients to these organizations? Are these organizations only for patients with cancer? Before addressing the answers to these questions, let's look at how healthcare has changed over the years.

In the early 1900's, most people died at home within a short period of time from infectious illnesses, while being cared for by family members. Now fewer people are dying at earlier ages from infectious diseases. Consequently the average life expectancy changed from 50 years old in the early 1900's to over 75 years old now. People are living longer and the rate of aging of the population is expected to accelerate over the next 50 years. Along with this increased longevity, medicine's focus has shifted from comfort to cure. This shift in focus has led to challenges. As people live longer, eventually most will develop a chronic illness with which they may live for several years.

Unfortunately, for many people, advanced disease goes hand-in-hand with (1) inadequately treated symptoms; (2) poor communication among physicians, patients, and family members; and (3) progressive functional dependence of patients with associated family and caregiver strain and burden. Our healthcare system often provides curative/life-prolonging treatment or comfort treatment and ignores the fact that most people living with advanced illness require both curative/life-prolonging treatment and palliative treatment, in varying degrees, at the same time. Forcing a choice between cure/life-prolonging treatment or comfort care until the end of life may result in suffering. Increased longevity is only a mixed blessing when it goes hand-in-hand with suffering. Does it have to be like this? No, it does not.

In the late 1960's, the first hospice programs were organized and began caring for the dying. The most notable initial program was founded by Dame Cicely Saunders in London. The term hospice, meaning lodging for travelers, was viewed by Dame Saunders as lodging for people near the end of life's journey lodging where they would receive support to complete their passage. Hospice programs in the United States started with the Connecticut Hospice in March of 1974. Because hospice cares for the terminally ill with a prognosis of six months or less, it quickly became associated with death, something our culture does not deal with well. Many patients and their family members view coming under the care of a hospice program as a death sentence and resist admission to such programs. Because of this resistance and the consequent short stays of patients in hospice care, another concept, palliative care, was developed.

The first United States hospital-based palliative care programs began in the late 1980's. To palliate means to ease discomfort by treating symptoms of an illness. According to the World Health Organization (WHO), palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO 2008). Palliative care is a medical specialty that provides interdisciplinary care that focuses on the relief of suffering and on enhancing the quality of life for patients and their family members. Palliative care programs have grown in number since the 1980's, currently reaching 52.8% of hospitals with 50 or more beds. However, disparities in geographic availability exist. Low rates of hospital palliative care exist in areas with greater numbers of uninsured and geographically isolated patients. Thus some of the sickest and most vulnerable patients do not have access to comprehensive care. Increasing data suggest that palliative care programs improve quality of medical care for patients with serious illness, and do so with lower associated hospital costs. These facts provide incentive for the development of hospital palliative programs.

You may be asking again, What is the difference between hospice and palliative care? Let's take a closer look.

Although separate disciplines, both hospice care and palliative care share similarities. They both share the goal of improving the quality of life for patients and their family members. And they both provide a team-oriented approach to medical care which includes pain and other symptom management, and patient-specific emotional and spiritual support. The teams in both organizations are interdisciplinary and may include the professions of medicine, nursing, pharmacy, social work, chaplaincy, counseling, nutrition, and rehabilitation specialties. The major difference is in the timing of services. The National Hospice and Palliative Care Organization (NHPCO, 2012) stresses the following six points to remember about hospice:

1. Hospice care is usually provided in the home or where the patient calls home.
2. Hospice cares for people with any kind if life-limiting sickness.
3. Hospice is not limited to six months of care.
4. The focus of hospice is now on not giving up but on caring, not curing.
5. Any individual can contact hospice to learn what the requirements are for a specific program.
6. Hospice is fully covered by Medicare, Medicaid, and most private health plans and HMOs.

The NHPCO (2012) stress that palliative care brings the same interdisciplinary team approach earlier in the course of a serious illness. Hospices are the largest providers of palliative care services in the country with many organizations working to offer a seamless continuum of care through the course of a serious illness.

Hospice supports the patient and family through the dying process and the family through the bereavement process. All hospice care is palliative care. Palliative care, on the other hand, is not time-restricted. Palliative care can occur at any phase of the disease from diagnosis on and can last for years. Also no specific therapy is excluded if it can improve the patient's quality of life. Palliative care can meet the needs of patients and family members who are not yet eligible for hospice services as well as those who still want to pursue more aggressive treatments. It may be offered at any point in a serious illness, along with aggressive primary therapy, the goal of which may be cure or prolongation of life. It is not dependent on prognosis.
 

Palliative care, or care to relieve discomfort, in the broad sense of the term, is best achieved through close coordination and partnership between palliative care and hospice programs from diagnosis to the end stages of an illness. Recognizing the need for partnership, the National Consensus Project for Quality Palliative Care (NCP) was formed in 2002 with the objective of increasing the awareness of palliative care as an option in treating individuals with life-threatening or debilitating illnesses. Patients of all ages with a wide range of diagnoses who are living with persistent or recurring conditions that adversely affect their daily functioning or that will reduce their life expectancy will benefit from palliative care. Palliative care is not limited to individuals with a diagnosis of cancer. According to the Clinical Practice Guidelines for Quality Palliative Care (2009) developed by the NCP, the following populations of patients will benefit from palliative care: 

• Individuals with congenital injuries or conditions leading to dependence on life-sustaining treatments and/or long-term care with support by others for activities of daily living.
• People of any age with acute, serious, and life-threatening illnesses (such as severe trauma, leukemia, or acute stroke), where cure or reversibility is a realistic goal, but the conditions themselves and their treatments pose significant burdens and result in poor quality of life.
• People living with progressive chronic conditions (such as peripheral vascular disease, malignancies, chronic renal or liver failure, stroke with significant functional impairment, advanced heart or lung disease, frailty, neurodegenerative disorders, and dementia).
• People living with chronic and life-limiting injuries from accidents or other forms of trauma.
• Seriously and terminally ill patients (e.g. people living with end-stage dementia, terminal cancer, or severe disabling stroke), who are unlikely to recover or stabilize and for whom intensive palliative care is the predominant focus of care.

Looking closely at this list of patients who can benefit from palliative and hospice care, it is clear that palliative care is applicable early in the course of illness in conjunction with curative treatment. Palliative care continues through cure or transitions to hospice care until death and into the family's bereavement period.

How different is this from the current experience for many patients and their family members? All too often, the initial focus on curative treatment after diagnosis delays the acknowledgment of support needs. As patients decline, increased symptom management issues arise along with increased stress on family and finances. All too often it is only when no further treatment options exist when referrals are made to hospice or palliative care. But palliative services should not be substituted for curative or disease-modifying care. However an environment should be created in which the needs of patients who fit the criteria for hospice/palliative care are regularly and systematically assessed to determine what mix of services is required to meet their physical, psychological, social, practical, and spiritual needs and the needs of their family members.

With the hope of encouraging the highest quality of care as early as possible after diagnosis, palliative care services should be available for all patients from the time of diagnosis with a life-threatening or debilitating condition. Patients should not receive sequential curative treatment, followed by palliative care when curative treatment is no longer deemed helpful, and then a short period of time with hospice care. To ensure maximal benefit, these services should be integrated into all healthcare settings so that there is a continuum of care from diagnosis of a life-threatening or debilitating illness through the terminal phase. Ideally, when patients are diagnosed with a life-threatening or debilitating condition, they should begin curative treatment and palliative care. The underlying condition can be treated simultaneously as palliative care issues are tended to. As increased symptom management issues arise, palliative care increases in amount and intensity. At all stages of the disease, effective palliative care increases the likelihood that the patient will cope better with the rigors of therapy and maintain a satisfying level of physical and psychosocial functioning. Palliative care offers a model for the assessment and management of the complex needs of patients who seek to maintain function and comfort during the course of a life-threatening disease and then transition with ease into the terminal phase. These goals complement life-prolonging therapy and help maintain the quality of life of the patient and family.

The National Consensus Project for Quality Palliative Care (NCP), along with an interdisciplinary group of advisors, developed clinical practice guidelines for optimal palliative care to improve the delivery of palliative care in the United States. The NCP guidelines are applicable for palliative care programs across all settings: hospital-based, ambulatory, and home care. They include eight broad sections or domains, and within each section there are specific recommendations. The National Quality Forum (NQF) was created in 1999. The goal of NQF is to develop and implement a national strategy for health care quality measurement and reporting. NQF extended the NCP guidelines by developing a set of preferred evidence-based practices for each of the eight domains. The NCP guidelines (2009) address the following areas:

1. Structure and Process of Care: The key recommendations in this section are aimed at building systems of quality palliative care and include:
   1. conducting a comprehensive interdisciplinary assessment of the patient and family;
   2. developing a plan of care to address their needs;
   3. providing care that is consistent with the plan of care;
   4. providing education and training for the team;
   5. focusing on quality palliative care outcomes;
   6. recognizing the emotional impact on the team providing care to patients with life-threatening illnesses;
   7. developing a relationship with hospice resources to ensure continuity of care; and
   8. providing a physical environment for care which meets the needs of the patient and family.
2. Physical Aspects of Care. Quality care is not possible without attention to physical concerns. Pain, other symptoms, and treatment side effects need to be managed promptly using evidence-based practices. Ongoing assessment and reassessment is the most important component of a successful symptom management plan. Pain is not a benign state and inadequately controlled pain may even hasten death. Unrelieved pain can increase physiological stress and have a negative impact on the immune system. It can decrease mobility and consequently increase the risk of pneumonia and thromboembolism. Additionally, it can lead to depression. Similar to pain, other physical symptoms, e.g. dyspnea, fatigue, anorexia, nausea/vomiting, and constipation or diarrhea, create suffering and distress. Treatment of distressing symptoms and side effects should include pharmacologic, non-pharmacologic, and complementary/supportive therapies. Patients and family members need to be provided education on the disease and its consequences and symptoms and also on the possible side effects of treatments.
3. Psychological and Psychiatric Aspects of Care. Attention to psychological and psychiatric aspects of care is as essential as attention to physical care. Anxiety, depression, delirium, and behavioral disturbances need prompt and ongoing assessment and management. Grief and bereavement programs need to be available for patients and their family members before and for at least 13 months after the death of the patient.
4. Social Aspects of Care. Quality care encompasses the entire family, not just the patient. The family and patient need to be cared for as a unit. Needs for support of the patient and family intensify as the disease progresses. Routine patient and family meetings need to be conducted, a social care plan formulated, and appropriate referrals for services made.
5. Spiritual, Religious, and Existential Aspects of Care. Many patients with serious illnesses rely on spiritual or religious beliefs and practices to help them cope with their disease. The religious beliefs of patients and family members need to be respected and they need access to clergy in their own religious traditions. Spiritual concerns need to be assessed and addressed. The spiritual dimension extends beyond formal religious beliefs. It includes existential questions concerning why things happen, questions not answered by medicine and science, which looks at how things happen.
6. Cultural Aspects of Care. In a society as diverse as our own, cultural considerations are a topic of increasing importance. Culturally based values, beliefs, traditions, and rituals impact quality of life and may take on added significance during serious illness. Key recommendations are to assess and attempt to meet the culture-specific needs of patients and family members; respect and accommodate a range of language, dietary, and ritual practices of these individuals; utilize translation resources; and recruit and hire individuals in the setting to reflect the cultural diversity of the community.
7. The Imminently Dying Patient. Key recommendations within this domain include recognizing and communicating signs and symptoms of impending death, introducing or reintroducing hospice as the health of patients decline, delivering care after death respectfully with attention to cultural and religious practices, and activating a bereavement plan. How do we recognize the period of imminent death? According to the American Academy of Hospice and Palliative Medicine all patients go through a stereotypical pattern of signs and symptoms in the days prior to death. This period of time may be less than 24 hours or as long as two weeks. Initially patients become bed bound, lose interest in eating or drinking, and have cognitive changes such as delirium or spend increasing amounts of time sleeping. Later they have only brief periods of wakefulness, may develop fever, have altered respiratory patterns, and develop mottled extremities. Eventually, coma and death follow. Resuscitation is not an effective treatment as the patient approaches life's end. Unfortunately, most of us have witnessed patients who were not peaceful in the final days or hours of their lives. Preferred practice dictates that patients be provided with adequate analgesia and sedation to achieve comfort during the active dying phase. The truth, though, is that patients are still under-treated. Many physicians and nurses fear that opioids may cause respiratory depression and hasten death. Why is this so? Ethical articles frequently discuss the principal of double effect (PDE). The PDE is used to justify the administration of opioids to relieve pain even though they may lead to the unintended consequence of hastening death by respiratory depression. In other words, according to the principal, a good end is promoted (pain relief), but that action may lead to serious harm (death). An action with potentially good and bad effects is ethically permissible when carried out with the intention of achieving the good effect. These discussions likely reinforce the erroneous belief that opioid administration hastens death. Pain is a powerful antagonist to respiratory depression. Also, respiratory depression is rarely seen when opioid doses are carefully titrated. Tolerance develops quickly to this effect. In fact, rather than hastening death, the correct use of opioids is more likely to prolong a patient's life (refer to domain #2: physical aspects of care). These erroneous concerns and fears about using opioids and of opioids hastening death need to be addressed.
8. Ethical and Legal Aspects of Care. This final domain of quality palliative care addresses the promotion of advance care planning so the patient's or surrogate's preferences for care are communicated across the healthcare continuum. The interdisciplinary team members must be knowledgeable about legal and regulatory issues, regarding such things as advance care planning and directives, roles and responsibilities of surrogate decision-makers, appropriate prescribing of opioids and other controlled substances, pronouncing death, and requesting autopsy and organ transplant.

Could we have done a better job helping Mr. S and his wife? Diagnosed with locally advanced NSCLC, Mr. S. was offered aggressive therapy with concurrent radiation and chemotherapy. Trials with this protocol do yield an increased survival (median of 16.1 months), but are associated with increased severity of treatment related side effects. Mr. S was living with two chronic progressive conditions (lung cancer and COPD) and was receiving aggressive treatment associated with potentially significant side effects. According to the Clinical Practice Guidelines for Quality Palliative Care (2009) developed by the National Consensus Project for Quality Palliative Care (NCP), Mr. S fit the criteria for two categories of patients who would benefit with palliative care: (1) people with progressive chronic conditions and (2) people with life-threatening illnesses receiving treatment that results in side effects causing poor quality of life. But instead of receiving palliative care services from the time of diagnosis, Mr. S received in sequence curative treatment, followed by palliative/hospice care when curative treatment options were exhausted. His oncology and medical providers were having difficulty controlling his symptoms. When the situation is looked at retrospectively, the phone calls Mrs. S was making a couple of times a week to her husband's oncologist and primary care provider, Mr. S's intermittent hospitalizations, and the pain that he was enduring indicated a highly stressful situation for both of them. If he had received simultaneous curative treatment and palliative care with his lung cancer being treated at the same time that palliative care issues were being addressed, would he and his wife have been spared some of the stress they obviously felt? Probably so. Palliative care is an approach to patient care that should be routinely integrated along with life-prolonging therapies. At all stages of the disease, effective palliative care increases the likelihood that the patient and family will cope adequately with the rigors of therapy and maintain a satisfying level of physical and psychosocial functioning.

Another aspect to consider is the lack of advance care planning, even when Mr. S. had progression of disease and the treatment goal changed from prolongation of life to comfort. It wasn't until his disease progressed on second-line treatment and limited further treatment options existed that palliative care services became involved and advance care planning was addressed. Mrs. S stated that she and her husband had never talked about treatment failure and dying. Was this circumstance unusual? No, it was not. During end-of-life discussions, it becomes clear that most patients have not communicated their wishes for end-of-life care to their loved ones. Mr. and Mrs. S. were overwhelmed when faced with the diagnosis of terminal illness. Would they have talked about this circumstance sooner and not felt so overwhelmed if palliative care services had been involved at diagnosis? Probably so, since quality palliative care addresses the promotion of advance care planning.

Quality palliative care should be provided to all patients who are living with persistent conditions that adversely affect their daily functioning or that will decrease their life expectancy. It should not be reserved for the final days of life. Nurses can be influential in advocating on the behalf of their patients for referral to palliative care services.

Quality palliative care is aimed at ensuring the best care each of us would expect for ourselves or someone we cared about when facing a life-threatening or debilitating illness. Take a moment to reflect on what you would consider a good situation at that time. Would you want to have discussed with your health care team what care you will receive? Would you want to be comfortable at home surrounded by family and friends? Now envision a bad situation. Would it include not discussing advance care planning with your health care provider? Would it include poor symptom control as curative treatment is pursued? Would it include being on a respirator in restraints in a hospital intensive care unit? Would it include separation from your family and friends? What would you want?

Nurses spend more time with patients and their family members than any other member of the health care team. Nurses can impact quality of life for their patients by identifying those patients with life-threatening illnesses or conditions. Early identification means that palliative care can be started sooner, allowing patients and family members, along with their health care teams, to set and achieve goals and experience what they define as optimal quality of life. Maybe we can all identify groups of patients within our practice areas that would benefit by early palliative care consults and begin working toward having those patients referred to palliative care services while undergoing their life-prolonging therapy, giving comfort, love, and respect on an ongoing basis.

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