Palliative Care: An Ethical Obligation
Stephanie C. Paulus
Throughout my rotations at O'Connor Hospital as a Health Care Ethics Intern, I found the Palliative Care Team to be an invaluable resource in meeting the complex needs of hospitalized patients. In studying biomedical ethics, it is clear that some of the most challenging ethical questions in clinical medicine surround care and decision-making at the end of life. As I witnessed various end-of-life ethical dilemmas first-hand, I reflected on the fundamental ethical principles of beneficence, nonmaleficence, and autonomy that guide clinical medicine and their direct application to palliative care.
Studies on palliative care reveal numerous positive outcomes for patients, their families, and hospitals, yet only thirty-percent of American hospitals have some sort of palliative care program. After seeing the high-quality, beneficial, patient-centered care provided to patients at the end of life through O'Connor's Palliative Care Team, I realized that the lack of palliative care programs in American hospitals is a complete ethical failure-a failure on the part of hospitals to attend to the needs, and to relieve the pain and suffering, of their patients when it is entirely possible to do so.
The basic philosophy of palliative care is to achieve the best quality of life for patients even when their illness cannot be cured. Palliative care is provided through comprehensive management of the physical, psychological, social, and spiritual needs of patients, while remaining sensitive to their personal, cultural, and religious values and beliefs. Hospital palliative care services are often provided through an interdisciplinary team of health care professionals including, but not limited to: physicians, nurses, psychologists, social workers, and chaplains. There is a great need for palliative care services in American hospitals. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) and many subsequent studies discovered poor quality of care at the end of life in many hospitals and in-hospital death characterized by uncontrolled pain and prolonged suffering.
I have found palliative care to provide many positive outcomes for hospitalized patients including: expert pain and symptom management, assistance with difficult decision making, and assistance in establishing goals of care and appropriate treatment plans. In-patient palliative care services better coordinate patient care, ensure and respect patient autonomy, and improve patient-physician communication. Overall, palliative care improves quality of life for patients suffering incurable, progressive illness in accordance with their values and preferences. In addition, palliative care helps hospitals to provide cost-effective, high-quality care by placing patients in the most appropriate level of care, decreasing hospital length of stay, expediting appropriate treatment, and reducing the use of non-beneficial resources.
Hospital palliative care services are significant in realizing that "the task of medicine is to care even when it cannot cure." Patients deserve the best quality of health care hospitals can provide at all stages of illness. The complex needs of dying patients in particular can be met most effectively through dedicated palliative care programs. Hospitals are ethically obligated to offer such programs because the principles of beneficence and nonmaleficence require that hospitals, in addition to clinicians, seek to improve the quality of life and relieve the pain and suffering of all patients to the best of their ability.
Meet Mrs. Smith
Mrs. Smith, a 71 year old female, was admitted to the hospital with an exacerbation of her chronic obstructive pulmonary disease (COPD) and pneumonia. Her symptoms were cough, fever, headache, and shortness of breath. Mrs. Smith also had a history of diabetes and was in the hospital with pneumonia three weeks prior. Over the next few days, Mrs. Smith's condition worsened. She was transferred to the intensive care unit (ICU) when the infection spread to other organs of her body, inducing shock. Her care was transferred to the on-call resident who was unfamiliar with her case. She continued to complain of headache and shortness of breath, and the nurses noted that she was increasingly irritable and hardly slept. During the night, Mrs. Smith suffered an acute nose bleed and aspirated blood into her lungs, causing respiratory distress, and she was intubated. Once a fairly independent woman, Mrs. Smith now lay in the ICU with a spreading infection and a ventilator pumping air into her lungs to keep her alive.
Mrs. Smith's son and daughter-in-law came to visit every afternoon. They noticed a significant change in Mrs. Smith's health status and spirit, but remained hopeful that she "was a fighter," and would turn around. By writing on a pad of paper, Mrs. Smith communicated to her son that she was very uncomfortable and particularly worried about missing Sunday Mass. As Mrs. Smith's condition continued to decline, she became confused and disoriented. She did not have an advance health care directive, and when the doctor initiated a discussion about her code status, the family was uncertain of what to do because they had never discussed it before. The family did not understand why her condition was not improving and became increasingly worried about the cost of the hospital stay.
The case of Mrs. Smith presents several concerns: First, Mrs. Smith failed to receive adequate pain and symptom management-she continued to be short of breath while her headache and insomnia were completely overlooked. Second, inadequate communication between the patient, family, and clinical team meant that goals of care were not discussed while Mrs. Smith was still able to communicate, and the family never realized the severity of Mrs. Smith's condition. This led to uncoordinated care that compromised Mrs. Smith's quality of life and her autonomy when decisions needed to be made. Mrs. Smith received suboptimal care that failed to meet her physical, psychosocial, and spiritual needs.
What if Mrs. Smith were your mother? You would want her to have the best quality of life possible. Ideally, you would want to see her battle the pneumonia, come off the respirator, and return home to a happy life. In the meantime, you would want her pain to be relieved, her breathing to be eased, and her spiritual and financial concerns to be recognized. If recovery to her previous state of health was not possible, you would want to assure that your mother received care that was consistent with her personal values. All physicians want to be able to provide such holistic care for their patients, but the reality is that hospital stays are expensive and physicians simply do not have the time to provide adequate psychosocial and spiritual care, especially in acute care settings such as the ICU.1 The ethically responsible solution to providing quality care for Mrs. Smith, and others in similar circumstances, is to provide in-patient palliative care services through a dedicated interdisciplinary health care team.
What is Palliative Care?
The basic philosophy of palliative care is to achieve the best quality of life for patients even when their illness cannot be cured. In contrast to hospice care, palliative care is offered at any stage of illness: in conjunction with life-prolonging therapy or as comfort care at the end of life.2 Palliative care is provided through comprehensive management of the physical, psychological, social, and spiritual needs of patients, while remaining sensitive to their personal, cultural, and religious values and beliefs.3 In order to accomplish such holistic care, hospital palliative care services are most often provided through an interdisciplinary team that draws on the expertise of a variety of health care professionals. Palliative care teams require knowledgeable, skilled, and experienced clinicians and may consist of physicians, nurses, psychologists, pharmacists, chaplains, social workers, nutritionists, and physical therapists.4 A distinctive palliative care unit may be set up within a hospital to care for patients, but more often a specific Palliative Care Team will provide services to patients throughout the hospital. Either way, a clearly identified, accessible, and accountable team is essential in order to coordinate care, facilitate communication, and ensure that changing needs and goals of patients are met throughout their hospitalization.5
Studies on palliative care reveal numerous positive outcomes for patients, their families, and hospitals, yet only thirty-percent of American hospitals have some sort of palliative care program.6 In my opinion, this is a complete ethical failure-a failure on the part of hospitals to attend to the needs, and to relieve the pain and suffering, of their patients when it is entirely possible to do so. Hospitals are ethically obligated to offer palliative care services because the principles of beneficence and nonmaleficence require that hospitals, in addition to clinicians, seek to improve the quality of life and relieve the suffering of all patients to the best of their ability.
Ethics and Palliative Care
The Principles of Beneficence and Nonmaleficence
The ethical principle of beneficence states that "we should act in ways that promote the welfare of other people."7 In a very basic way, beneficence is implicit to the role of all health care professionals as part of the "helping professions:" doctors, nurses, and other health care workers daily accept the duty to seek to benefit their patients. Similarly, the principle of nonmaleficence claims that "we ought to act in ways that do not cause needless harm or injury to others."8 While we recognize that the practice of medicine is not perfect, and all medical therapies involve some risk of harm, we trust and expect that health care professionals are cautious, diligent, and thoughtful when providing care.
In the same way, hospitals and health care organizations are also held to certain ethical standards. Hospitals have an ethical obligation to support their staff, as well as manage their organization, in ways that ensure patient safety and patient rights, and in ways that promote quality health care. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) holds its accredited hospitals to national standards for health care quality, including effective pain management.9 Most hospitals recognize these duties and have mission statements claiming a dedication to high-quality health care, and often a specific dedication to patient-centered care. Hence, patients admitted to hospitals with acute medical conditions expect appropriate, high-quality health care.
The principles of beneficence and nonmaleficence form the foundation of the ethical duties of health care professionals, requiring that harm be avoided and benefit be sought for patients at all stages of illness. Similarly, these ethical principles extend to health care organizations, requiring that hospital management, financial practices, and clinical policies and procedures support the provision of quality, patient-centered health care that is beneficent, minimizes unnecessary harm, and respects patient autonomy.
The Need for Palliative Care
Palliative care is especially suited to patients with incurable, progressive illnesses and often is centered on the needs of patients and their families at the end of life. Historically, palliative care has been provided most often to cancer patients, but studies suggest that patients suffering from chronic illness share many of the same problems experienced by those with cancer, such as weakness, fatigue, pain, nausea, and weight loss.10 Patients with chronic illnesses may, in fact, have different palliative care needs than cancer patients due to a more prolonged illness trajectory.11 Fitzsimons et al. claim that chronic illness is the "modern epidemic" and the major cause of death and disability in the developed world today. Yet despite the establishment of hospices and home care, fifty-three-percent of patients die in hospitals.12 Heart failure and end stage respiratory disease are among the most common causes of death in hospitalized patients and represent a significant population likely to be in need of palliative care.13 Terminal phases of such chronic diseases are unpredictable and highly likely to need pain and symptom control.14 Patients suffering with chronic illness, however, are often referred to palliative care services very late in their illness, or not at all.15 Thus, most patients suffering with chronic illness, like Mrs. Smith, reach the final phase of life without proper physical, psychological, social, and spiritual support.
Furthermore, several studies have shown that high-quality, ethical health care has generally not been provided to patients in terminal stages of illness. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) conducted from 1989 to 1994 discovered poor quality of care at the end of life in many hospitals. The in-hospital deaths observed by SUPPORT were characterized by uncontrolled pain, prolonged suffering, and caregiver hardship.16 These negative findings brought to attention the need to improve care for the dying and in the years since, researchers have sought to understand what patients and families really want, need, and expect at the end of life.17 The factors found to be important to most patients and families at the end of life include: pain and symptom management, good patient-physician communication, being prepared for what to expect, achieving a sense of completion in life, clear decision making, and being treated as a "whole person."18
These factors should be important in all types of health care. The inherent dignity of human beings obligates health care professionals to treat all of their patients as whole persons and make the effort to relieve suffering when it is possible to do so. Studies continue to show, however, that many health care professionals lack the necessary knowledge to provide palliative care and deal effectively with end of life issues.19 Thus, the various needs of hospitalized patients continue to go unmet and their ethical rights, ignored.
Appropriately, much of the recent literature exhorts clinical teams to address the needs of patients suffering from chronic disease and embrace a more determined palliative care approach at earlier stages of illness.20 In order to do this, clinical teams need to be supported by the health care organizations. Palliative care has been shown to significantly improve the quality of life of patients suffering from chronic illness and all those nearing the end of life.21 Hospitals should educate their health care professionals about palliative care and end-of-life issues, while management and policies should reflect and encourage the principles of beneficence, nonmaleficence, and autonomy. It is my opinion that hospitals have the ethical obligation to support the provision of quality care by implementing in-patient palliative care services.
The Principle of Autonomy
Palliative care services also help ensure the autonomy of chronically ill patients. The principle of autonomy asserts the ethical right to make one's own decisions and carry them through.22 This principle values the intrinsic worth of the individual and a person's ability to decide what is in his or her own best interest. In respecting patient autonomy, health care professionals and hospitals are to respect patient decisions and actions without unnecessary interference.23 Autonomy is critical for making any decision regarding one's health care, but it is especially important for patients with an incurable progressive illness when treatment decisions are less clear and depend greatly on personal values and preferences.
Unfortunately, patient autonomy is often not considered or respected in end of life health care. SUPPORT revealed that life-prolonging measures were being used in situations where they were both medically ineffective and unwanted by patients and families, and other studies have shown that sometimes a patient's preference to forego resuscitation is completely disregarded.24,25 Palliative care services can help refine and enforce hospital policies and procedures that respect patient autonomy. Such policies may include: initiating advance directives, developing guidelines for Do-Not-Resuscitate (DNR) orders and withdrawing or withholding treatment, supporting comfort care procedures, and caring for patients in comas and persistent vegetative states.
The Goals of Palliative Care
In accordance with the principles of nonmaleficence, beneficence, and autonomy, the primary goals of palliative care are specifically patient-centered. They are (1) to achieve and support the best quality of life possible for patients, (2) to relieve pain and suffering through expert pain and symptom control, and (3) to guide and assist patients or surrogate decision-makers in establishing appropriate goals of care. Palliative care has many other goals including providing practical support for patients' families and caregivers, coordinating hospital and community resources, and supporting and educating hospital clinicians. These additional goals, while important, will not be discussed in detail here, as this paper focuses primarily on the aspects of palliative care that are direct ethical obligations to the patient.26
Quality of Life
The goal of achieving and supporting the best quality of life possible for patients is essentially part of all types of health care. Any injury or illness in itself threatens quality of life. One of the primary goals of medicine is "to restore, maintain, or improve quality of life."27 Working toward the best quality of life for a patient entails defining what the best quality of life is for that patient. Quality of life is inherently subjective and can only be determined accurately by the individual living that life. For a patient with a broken arm, it is easy to assume that their quality of life will improve when the fracture is healed, thus the appropriate, beneficent action is to cast the arm with the patient's consent.
For patients with incurable chronic illness, achieving the best quality of life is not as straight forward. Two patients could have entirely different views of the best quality of life, even if they suffer from the same illness. Some may desire a quality of life that is tolerable, while others may want a quality of life that is higher than just survival. Achieving the best quality of life may mean achieving an ordinary life or achieving a meaningful life.28 Each of these options depends on the patient's subjective evaluation of desired quality.
In addition, quality of life encompasses more than just physical health. Fitzsimons et al. identify decreased health status, decreased independence, social isolation, family burden, limited resources, depression, and concerns about the future as contributing to lower quality of life for terminally ill patients with chronic illness.29 Quality of life necessarily includes physical, psychological, social, and spiritual domains of well being.30 There is no obvious general standard for quality of life because it is influenced by a person's experiences, beliefs, expectations, and perceptions.31 Furthermore, it is often the case that patients' views of quality of life will change as their illness progresses. Hence, it is the goal of palliative care to continuously honor changing patient preferences in order to support the best quality of life for each patient. Members of a palliative care team work with the patient, the patient's health care team, and if applicable, the patient's family, to identify patient preferences, paying careful attention to patient values, goals, and priorities, as well as cultural and spiritual perspectives.32
Maintaining a certain level of quality of life is increasingly important as palliative care patients reach the terminal stage of their illness and the final stages of their life. American culture poorly prepares people for dealing with the discomfort of death and dying, and within a hospital environment primarily focused on curative treatment, death is often viewed as a failure.33 An integral part of palliative care, therefore, is to regard dying as a normal process and to help patients achieve a peaceful death.34 The End-of-Life Nursing Education Consortium (ELNEC) defines a peaceful death as one that is free of suffering, allows the patient to achieve closure in life, and is consistent with the patient's wishes and beliefs.35
Achieving this primary goal of supporting patient quality of life is ethically required because actions or omissions that hinder the best quality of life can be physically and emotionally harmful. Presuming to know what a patient's desired quality of life is without asking violates patient autonomy and thus, also violates the dignity of the patient. Insensitivity to personal, cultural, and religious perspectives could cause psychological, social, or spiritual harm.36 One of the hallmark qualities of palliative care is that it integrates the psychological, social, and spiritual aspects of health care, with the physical. Hospital in-patient palliative care services coordinate various hospital resources and departments in order to provide quality patient care and fulfill the ethical duty to provide beneficial care that respects patient autonomy.
Relief of Suffering
The second goal of palliative care is intimately linked to the first goal-relief of suffering is one necessary means to achieve the best quality of life. For many, at the very least, this means managing pain and distressing symptoms. Yet while pain and physical symptoms are related to suffering, they must not be directly equated with suffering: not all suffering is painful, and not all pain causes suffering. Suffering can encompass physical and psychological symptoms, existential concerns, and empathetic suffering with others.37 Like quality of life, pain and suffering are to varying extent, subjective experiences, influenced by a person's social and religious cultures. Some patients may, in fact, find some elements of suffering to be a positive experience, especially as they search for meaning and closure towards the end of their life.38 Nonetheless, aggressive management of pain and suffering remains a primary goal of palliative care and is implicit in its very name. Palliate is defined as "to reduce the violence of (a disease)" and "to ease (symptoms) without curing the underlying disease."39 While it is impossible and impractical to eliminate all forms of a patients' suffering, palliative care aims to alleviate suffering through attention to spiritual, existential, and social concerns, as well as physical pain, when it is both possible and desired by the patient.
It is especially within the ability and the ethical duty of palliative care to relieve physical pain and symptoms. Pain is the most common and widely feared symptom of hospital patients and studies reveal that up to fifty-percent of terminally ill patients spend most of their time in moderate to severe pain.40,41 Not relieving pain and other distressing symptoms when one has the ability to do so is harmful to the patient and violates the principle of nonmaleficence. Untreated pain can result in medical complications, longer hospital stays, and decreased physical independence-all of which can lead to unnecessary suffering.42 Uncontrolled pain also threatens patient autonomy when it hinders competent decision-making.
Limited understanding of pain and symptom relief has been cited as a barrier to providing palliative care in the hospital setting.43 Health care professionals often under-medicate for pain out of fear of addiction or because many analgesics cloud the consciousness of the patient. But under-medication itself is unethical in that it willingly prolongs or fails to adequate relieve pain. Jonsen et al. in Clinical Ethics state,
- Patients should not be kept on a drug regimen inadequate to control pain because of the ignorance of the physician or because of an ungrounded fear of addiction . . . [S]ensitive attention to patient's needs, together with skilled medical management, should lead as closely as possible to the desired objective: maximum relief of pain with minimal diminution of consciousness and communication.44
In fact, addiction to pain medication is a rare occurrence, and even though the subjective nature of pain makes it difficult to identify, over ninety-percent of pain episodes and other symptoms can be effectively treated with standard analgesic therapies.45,46 In order to provide comprehensive pain and symptom management for patients, hospitals need to hire physicians and nurses with specific expertise in pain and symptom management, dispel myths about addiction to analgesics, and educate their staff on recognizing and treating pain and distressing symptoms. These tasks can be accomplished most effectively with the implementation of a hospital-wide palliative care program. Controlling pain and symptoms early in illness helps maintain patient independence and autonomy, providing a significant benefit to patients and avoiding unnecessary harm.
In addition to physical pain, palliative care aims to include care directed toward the psychological, social, and spiritual dimensions of pain. Worry, anxiety, and depression are some of the leading symptoms of advanced illness and it is noted that failure to respond to psychological and spiritual needs of patients coping with life-threatening illnesses may intensify suffering.47 Psychologists and chaplains specifically can help patients cope with the many losses that face them-such as the loss of independence and the loss of control over one's body.48 In addition, palliative care provides a supportive environment for patients to address the fears and anxiety that accompany terminal illness and the dying experience.49
Establishing Goals of Care
The third goal of palliative care is to guide and assist patients or surrogate decision-makers in establishing appropriate goals of care and advance care planning. Like Mrs. Smith, most patients are in the hospital due to an acute health crisis, which forces them and their families to confront the reality of their illness and the decisions that need to be made regarding future care. As patients confront progressive, incurable illnesses at the end of life, the current health care system often fails to facilitate a smooth transition through changing goals of care.50 Many people do not have their wishes documented in an advance health care directive and approximately fifty-percent of DNR orders are written within two days of death.51 This means that many patients are receiving aggressive treatment in late stages of illness. It is unlikely this treatment is focused on quality of life or accounts for patient values and wishes.
But simply having an advance directive is not enough-research has documented that increased documentation of patient preferences does not inherently lead to improved care for the dying.52 Instructional advance directives document a patient's preference for certain procedures or interventions, but these directives are limited to specific treatment scenarios and often do not apply to the complex medical decision-making that happens at the end of life.53 Advance directives attempt to embrace the individual value and belief systems of patients, but they cannot be the sole reference when making health care treatment decisions, especially at the end of life. End-of-life values are not fixed qualities and for many patients, these values change over time and with changes in perceived quality of life.54
Nevertheless, advance care planning and establishing goals of care are essential because they enhance the control patients have over their care and assure autonomy if the patient is unable to communicate their wishes or make decisions at later stages of illness. Patients want a voice in their health care: they want to know what to expect and how to plan for their treatment and their future.55 Establishing goals early on for current and future health care helps to avoid future unnecessary harm and inappropriate prolongation of dying. It is well recognized that interventions focused on "curing" dying patients result in increased suffering, with little or no benefit for the patient.56 This suffering may even extend beyond the patient. Nurses also struggle ethically and emotionally when care for dying patients is focused on "technology" rather than on comfort and quality of life.57 In addition, twenty-percent of patients' relatives develop a physical illness in response to the stress of coping with their loved one's poor health.58
Quality advance care planning and establishing appropriate goals of care for those suffering with chronic illness depend on thorough, clear, ongoing communication between the clinical team, the patient, and the patient's family. Palliative care greatly facilitates this communication through family meetings. Palliative care teams are often able to promote informed choices by clarifying priorities and facilitating understanding of diagnosis and prognosis for patients and families. This process strengthens the patient-physician relationship and conveys a sense of safety in the health care system by providing well monitored and well communicated care that is consistent with patient values and preferences and in line with ethical principles.
Outcomes of Palliative Care
Thanks to modern medicine, people with advanced illness are living longer. The ready use of medical technologies such as ventilators, defibrillators, dialysis, chemotherapy, surgery, and pharmaceuticals, allows people to survive disease-related events such as heart attacks, and prolongs the life of those suffering from incurable illness. With seemingly unlimited treatment options at our fingertips, the emphasis of healthcare in the United States has become one of curative and life-prolonging interventions.59 As a result, hospitals are filling with seriously ill and frail adults. These patients, who will likely suffer multiple chronic illnesses like Mrs. Smith, want to stay as independent and healthy as possible, and need help controlling pain, making decisions, and communicating with their health care providers.
Palliative care has proven to provide high-quality, patient-centered care that aligns with patient values and preferences, and responds to the episodic and long-term nature of chronic illnesses.60 First, palliative care provides expert management of pain as well as control of fatigue, anxiety, breathlessness, nausea, depression, and other sources of symptom distress.61 Second, palliative care helps patients and surrogate decision makers with difficult decision-making as teams meet with patients and their families to discuss goals of care and develop treatment plans.62 In fact, goals of care and end-of-life discussions occur earlier when palliative care services are involved and treatment plans are developed and implemented more appropriately.63 Lastly, palliative care improves patient-physician communication and better coordinates care that is focused on the patient's quality of life. Overall, patients who receive palliative care in the hospital report extremely high levels of satisfaction with their care.64
Benefit to Hospitals
Vast resources are expended on the seriously ill. One study found that for those alive at age eighty-five, one-third of lifetime health costs are still ahead.65 By 2030, the number of people over the age of eighty-five in the United States is expected to double to 8.5 million.66 This prediction puts the hospitals that treat these patients at financial risk if they cannot find a way to provide care that is both high-quality and fiscally responsible. To meet the various needs of patients with advanced illness, hospitals must successfully deliver high-quality care while remaining fiscally viable.
Palliative care is essential to achieving quality and cost-effective care for the growing population of people living with chronic illness. First, in-patient palliative care services help decrease hospital length of stay, especially in the ICU.67 Since palliative care focuses on quality of life and patient preferences, appropriate goals of care are established early on and patients are placed in the most appropriate level of care. Second, palliative care often reduces the use of non-beneficial resources.68 The care plans formulated with the assistance of the palliative care team expedite appropriate treatment, avoiding redundant, unnecessary, or ineffective tests, procedures, and pharmaceuticals.69Third, hospital palliative care programs provide a systematic approach to care for patients with complex, high intensity needs.70 After such patients are referred to palliative care, the team helps the hospital match patient needs with appropriate health care resources. Finally, palliative care eases the transition between care settings which ensures quality care for patients once they have been discharged and reduces repeat acute hospital admissions.71 It has been shown that palliative care programs greatly increase hospice referral rates for patients who are non-responsive to curative intervention or who determine that the burdens of treatment outweigh the benefits.72
All of these benefits result in decreased costs for hospitals and health care providers and greater satisfaction among clinicians, patients, and their families. Provision of well-communicated and coordinated care requires significant staff time and effort. Palliative care programs support hospital staff and help them to provide this level of coordinated care for their patients, thus increasing staff job satisfaction and retention.73 Providing patient-centered care also increases patient and family satisfaction with hospital services, building loyalty to the institution.74
Hospital palliative care services are significant in realizing that "the task of medicine is to care even when it cannot cure."75 Patients who are suffering from prolonged, incurable illnesses still deserve the best quality of health care hospitals can provide. The complex needs of these patients can be met most effectively through dedicated palliative care programs. Through ongoing, thorough communication that addresses the physical, emotional, social, and spiritual needs of patients, palliative care teams support the best quality of life possible that all patients deserve. According to the Center to Advance Palliative Care, developing a palliative care program in a hospital requires a relatively low start-up investment and can have an immediate impact. Direct program costs are more than offset by the financial benefit to the hospital system.76,77 Palliative care services help hospitals and health care providers fulfill their ethical obligations to patients in that palliative care benefits patients, minimizes harm, and protects patient autonomy. The ethical principles of nonmaleficence, beneficence, and autonomy require that hospitals better integrate the palliative care philosophy into the cure-focused health care system by developing high-quality, in-patient palliative care services.
Revisiting Mrs. Smith
How could Mrs. Smith's care have been improved had there been a palliative care service when she was admitted to the hospital? The story would have gone something like this: After admission, the admitting physician and nurses recognized that Mrs. Smith had been suffering for some time with COPD and diabetes and had significant pain and symptom concerns. Additionally, since this was her second hospital admission within the month, they knew that a discussion regarding goals of care and advance care planning was necessary because given her history and diagnosis, bouts of pneumonia and respiratory distress would likely continue. Since COPD is an irreversible disease and relief relies solely on symptom control, the physician consulted the Palliative Care Team for assistance with symptom management and care planning discussions.
Mrs. Smith was given oxygen to assist her breathing and a skillfully managed dose of pain medication to relieve her headaches and help her to sleep. A family meeting was held with Mrs. Smith, her son and daughter-in-law, and several Palliative Care Team members including Mrs. Smith's attending physician, a Nurse Practitioner skilled in pain management, a social worker, and a chaplain. They discussed Mrs. Smith's personal values and goals of care while she was still able to communicate and were able to learn what quality of life meant to her specifically. Mrs. Smith stated that she would not want any heroic measures taken, such as cardiopulmonary resuscitation, if she would not be able to return home with an acceptable quality of life. She explained that she did not want to "be kept alive" with a mechanical ventilator or a feeding tube for an extended period of time, but only long enough for her to say goodbye to her children and grandchildren and to be blessed by her parish priest.
When it was clear that Mrs. Smith's pneumonia was not responding to the antibiotics, and her condition continued to worsen, the health care team knew they would not be able to provide the intensive monitoring and aggressive symptom management needed without a transfer to the ICU. The Palliative Care Team discussed the issue with Mrs. Smith's family who, consistent with Mrs. Smith's expressed wishes, decided against the ICU transfer. Although it was difficult for them to cope with the seriousness of her illness and to avoid aggressive treatment, they were comforted with knowing that she was to be kept comfortable and that they were following her expressed wishes against heroic measures. The Palliative Care Team made it clear to the family that by declining aggressive interventions, they were not assisting in Mrs. Smith's death, but allowing her body to take its natural course. With the support of the Palliative Care Team, Mrs. Smith and her family were able to make clear, informed decisions and avoid a stressful transfer to the ICU. The chaplain contacted Mrs. Smith's parish priest, who came to offer her the sacraments, and her children and grandchildren came to be with her and say goodbye. When Mrs. Smith went into respiratory distress from the nose bleed, her pain and symptoms were well controlled without intubation, and in the next few hours Mrs. Smith died peacefully surrounded by her family and a health care team who knew her well.
As demonstrated by the case of Mrs. Smith and confirmed by the literature, palliative care effectively supports the best quality of life for patients suffering prolonged illness. Through its interdisciplinary, holistic, and patient-centered approach, hospitals with palliative care services fulfill their ethical obligation to provide quality, beneficial care to all patients.
1B. Ferrell and N. Coyle, "An Overview of Palliative Care Nursing," American Journal of Nursing 102, no. 5 (2002): 26-31. Cited in Elizabeth M. Rice and Denise K. Betcher, "Evidence Base for Developing a Palliative Care Service," MEDSURG Nursing 16, no. 3 (2007): 144.
2Most hospice patients tend to have an advanced cancer diagnosis because the Medicare Hospice Benefit requires that hospice patients have a life expectancy of 6 months or less and that they forgo all curative therapies. This means that patients with non-malignant diseases are referred to hospice very late in their illness and fail to receive quality comfort care early on, and/or never receive hospice care at all.
3Last Acts Campaign, Task Force on Palliative Care, Robert Wood Johnson Foundation, "Precepts of Palliative Care," Journal of Palliative Medicine 1, no. 2 (1998): 110.
4Last Acts, 111.
6Center to Advance Palliative Care (CAPC), "Making the Case for Hospital-Based Palliative Care," http://www.capc.org/building-a-hospital-based-palliative-care-program/case (2008).
7Ronald Munson, Intervention and Reflection: Basic Issues in Medical Ethics, 7th ed. (Belmont, CA: Wadsworth/Thompson, 2004), 773.
9CAPC, "Making the Case."
10D. Fitzsimons et. al., "The Challenge of Patients' Unmet Palliative Care Needs in the Final Stages of Chronic Illness," Palliative Medicine 21 (2007): 314.
12CAPC, "Hospital-Based Palliative Care," http://www.capc.org/building-a-hospital-based-palliative-care-program/case/hospitalpc (2008).
13Fitzsimons et. al., 314.
14R. J. Dunlop and J. M. Hockley, Hospital-based Palliative Care Teams: The Hospital-Hospice Interface (Oxford: Oxford U Press, 1998), 7.
15P. Berry and W. Duggleby, "Transitions and Shifting Goals of Care for Palliative Patients and Their Families," Clinical Journal of Oncology Nursing 9, no. 4 (2005): 425-428. Cited in End-of-Life Nursing Education Consortium (ELNEC), Promoting Palliative Care in Long-Term Care Nursing: Geriatric Training Program. CD-ROM. (City of Hope and American Association of Colleges of Nursing, 2007), Module 1, 34.
16Lauren G. Collins, Susan M. Parks, and Laraine Winter, "The State of Advance Care Planning: One Decade After SUPPORT," American Journal of Hospice and Palliative Medicine 23, no. 5 (2006): 378.
18K. E. Steinhauser et al., "In Search of a Good Death: Observations of Patients, Families, and Providers" Ann Intern Med, 132 (2000): 825-832. Cited in Collins et al., 379.
19Ferrell and Coyle, cited in Rice and Betcher, 144.
20Fitzsimons et al., 321.
21CAPC, "Making the case."
23Of course, there are limits to patient autonomy, especially if their action would inflict harm on another person, or themselves.
24Bruce Jennings, "Preface" in A Hastings Center Special Report, Improving End of Life Care: Why Has It Been So Difficult? eds. Bruce Jennings, Gregory E. Kaebnick, and Thomas H. Murray (Briarcliff Manor: Hastings Center, 2005), 2-3.
25S. Middlewood, G. Gardner, and A. Gardner, "Dying in Hospital: Medical Failure or Natural Outcome?" Journal of Pain and Symptom Management, 22, no. 6 (2001): 1035-1041. Cited in ELNEC, Module 1, 35.
26For more information on goals of palliative care consult references 2, 7, & 17.
27Albert R. Jonsen, Mark Siegler, and William J. Winslade, Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 6th ed. (New York: McGraw Hill, 2006), 7.
28David Clark, Henk Ten Have, and Rien Janssens, "Conceptual Tensions in European Palliative Care" in The Ethics of Palliative Care: European Perspectives, ed. Henk ten Have and David Clark (Buckingham: Open U Press, 2002), 55.
29Fitzsimons et al., 314-321.
30End-of-Life Nursing Education Consortium (ELNEC), Promoting Palliative Care in Long-Term Care Nursing: Geriatric Training Program. CD-ROM. (City of Hope and American Association of Colleges of Nursing, 2007), Module 1, 13.
31Elizabeth M. Rice and Denise K. Betcher, "Evidence Base for Developing a Palliative Care Service," MEDSURG Nursing 16, no. 3 (2007): 144.
32Last Acts, 110.
33Last Acts, 109.
34World Health Organization, National Cancer Control Programmes, 2nd ed., (Geneva: World Health Organization, 2002), 84.
35ELNEC, Module 1, 5-11.
36ELNEC, Module 1, 12-17.
37N. I. Cherny, N. Coyle, and K. M. Foley, "Suffering in the Advanced Cancer Patient: A Definition and Taxonomy," Journal of Palliative Care 10 no. 2 (1994): 57-70. Cited in David Clark, Henk ten Have, and Rien Janssens, "Conceptual Tensions in European Palliative Care" in The Ethics of Palliative Care: European Perspectives, ed. Henk ten Have and David Clark (Buckingham: Open U Press, 2002), 57.
38ELNEC, Module 1, 9-10.
39Merriam-Webster, "palliate," http://www.merriam-webster.com/dictionary/palliate.
40CAPC, "What Patients Want," http://www.capc.org/building-a-hospital-based-palliative-care-program/case/patientswants/ (2008).
41N. A. Desbiens, A.W. Wu, et al. "Dying with Lung Cancer or Chronic Obstructive Pulmonary Disease: Insights from Support, Journal of the American Geriatrics Society 48, no. 5 (2000): S146-S153. Cited in ELNEC, Module 1, 35.
42ELNEC, Module 1, 35.
43Ferrell and Coyle, cited in Rice and Betcher, 144.
44Jonsen et al., 128.
45M. McCaffery and C. Pasero, Pain: Clinical Manual, 2nd ed., (St. Louis, MO: Mosby, Inc., 1999). Cited in ELNEC, Module 2, 5.
47Dunlop and Hockley, 12.
48ELNEC, Module 1, 10.
50Last Acts, 109.
51Middlewood et al, cited in ELNEC, Module 1, 35.
52J. A. Tulsky, "Beyond Advance Directives: Importance of Communication Skills at the End of Life," JAMA 294 (2005): 359-365. Cited in Collins et. al., 380.
53Collins et. al., 380.
55CAPC, "What Patients Want."
56Arnold et al., (2000), cited in Rice and Betcher, 144.
57K. McSteen and C. Peden-McAlpine, "The Role of Nurse as Advocate in Ethically Difficult Care Situations with Dying Patients," Journal of Hospice and Palliative Nursing 8, no. 5 (2006): 259-269. Cited in Rice and Betcher, 144.
58Dunlop and Hockley, 12.
59Last Acts, 109.
60CAPC, "Benefit to Hospitals," http://www.capc.org/building-a-hospital-based-palliative-care-program/case/hospitalbenefits/ (2008).
61CAPC, "Improving Clinical Outcomes," http://www.capc.org/building-a-hospital-based-palliative-care-program/case/outcomes/ (2008); ELNEC, Module 1, 14-17.
63Arnold et al.; Davis, et al.; Wrede-Seaman, cited in Rice and Betcher, 145.
64CAPC, "Improving Clinical Outcomes."
65Elliot J. Rosen, Families Facing Death: A Guide for Healthcare Professionals and Volunteers, (San Francisco: Jossey-Bass Inc., 1998).
66CAPC, "Benefit to Hospitals."
67CAPC, "Benefit to Hospitals"; Margaret L. Campbell and Jorge A. Guzman, "Impact of a Proactive Approach to Improve End-Of-Life Care in a Medical ICU," Chest 123 (2003): 270.
68Campbell and Guzman, 266.
69CAPC, "Benefit to Hospitals"; Campbell and Guzman, 270.
70CAPC, "Benefit to Hospitals."
75United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Services, (2001): 29.
76CAPC, "Benefit to Hospitals."
77For information on developing, financing, and implementing a palliative program see "Building a Hospital-Based Palliative Care Program," http://www.capc.org/building-a-hospital-based-palliative-care-program.
1] Arnold, R., et al. Pioneer Programs in Palliative Care: Nine case studies. New York: Robert Wood Johnson Foundation & Milbank Memorial Fund, 2000.
2] Center to Advance Palliative Care. Making the Case for Hospital-Based Palliative Care. 2008 http://www.capc.org/building-a-hospital-based-palliative-care-program/case.
3] Campbell, Margaret L. and Jorge A. Guzman. "Impact of a Proactive Approach to Improve End-Of-Life Care in a Medical ICU." Chest 123 (2003): 266-271.
4] Cherny, N. I., N. Coyle, and K. M. Foley. "Suffering in the Advanced Cancer Patient: a Definition and Taxonomy." Journal of Palliative Care 10.2 (1994): 57-70.
5] Collins, Lauren G., Susan M. Parks, and Laraine Winter. "The State of Advance Care Planning: One Decade After SUPPORT." American Journal of Hospice and Palliative Medicine 23.5 (2006): 378-384.
6] Dunlop, R. J. and J. M. Hockley. Hospital-based Palliative Care Teams: The Hospital-Hospice Interface. Oxford: Oxford UP, 1998.
7] End-of-Life Nursing Education Consortium. Promoting Palliative Care in Long-Term Care Nursing. City of Hope and American Association of Colleges of Nursing, 2007.
8] Ferrell, B. and N. Coyle. "An Overview of Palliative Care Nursing." American Journal of Nursing 102.5 (2002): 26-31.
9] Fitzsimons, D. et. al. "The Challenge of Patients' Unmet Palliative Care Needs in the Final Stages of Chronic Illness." Palliative Medicine 21 (2007): 313-322.
10] Jennings, Bruce, "Preface" A Hastings Center Special Report, Improving End of Life Care: Why has it been so difficult? Eds. Bruce Jennings, Gregory E. Kaebnick, and Thomas H. Murray. Briarcliff Manor: Hastings Center, 2005. 2-4.
11] Jonsen, Albert R., Mark Siegler, and William J. Winslade. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine, 6th ed. New York: McGraw Hill, 2006.
12] Merriam-Webster Dictionary Online http://www.merriam-webster.com
13] Munson, Ronald. Intervention and Reflection: Basic Issues in Medical Ethics, 7th ed. Belmont, CA: Wadsworth/Thompson, 2004.
14] Rice, Elizabeth M. and Denise K. Betcher. "Evidence Base for Developing a Palliative Care Service." MEDSURG Nursing 16.3 (2007): 143-148.
15] Rosen, E. J. Families Facing Death: A guide for Healthcare Professionals and Volunteers. San Francisco: Jossey-Bass Inc., 1998.
16] Steinhauser, K. E. et al. "In Search of a Good Death: Observations of Patients, Families, and Providers." Ann Intern Med 132 (2000): 825-832.
17] Task Force on Palliative Care, Last Acts Campaign, Robert Wood Johnson Foundation. "Precepts of Palliative Care." Journal of Palliative Medicine 1.2 (1998): 110.
18] Ten Have, Henk and David Clark, eds. The Ethics of Palliative Care: European Perspectives. Buckingham: Open UP, 2002.
19] Tulsky, J. A. "Beyond Advance Directives: Importance of Communication Skills at the End of Life." JAMA 294 (2005): 359-365.
20] United States Conference of Catholic Bishops. Ethical and Religious Directives for Catholic Health Care Services. 2001: 29.
21] World Health Organization. National Cancer Control Programmes, 2nd ed. Geneva: World Health Organization, 2002.
Stephanie C. Paulus wrote this paper as her senior honors thesis at Santa Clara University.
November 1, 2008
Professor Young Park New Global Jesuit Network Scholar
Professor Young Park from Sogang University in Seoul, Korea has been named Global Jesuit Network Visiting Scholar at the Ethics Center, thanks to a generous gift from Chuck and Nan Geschke.
A unique online learning opportunity to learn best practices in ethical campaign management
Ethics Center Director of Government Ethics Hana Callaghan teaches a new online course (MOOC) on campaign ethics.