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Managing care at the end of life

Hodo, Ashley MSN, RN; Buller, Leisha BSN, RN, CMSRN

doi: 10.1097/01.NUMA.0000416400.63410.fa
Feature: CE Connection

Palliative care and end-of-life care aren't the same. Review the options for patients withterminal illnesses.

In the Inpatient Palliative Care Unit at Texas Health Harris Methodist Hospital in Fort Worth, Tex, Ashley Hodo is the manager and Leisha Buller is the nursing supervisor.

What does it mean to be at the end of life? What treatments do I want? Are all of my affairs in order? It's a challenge to answer these patient questions, but you can help your staff be prepared.

The authors have disclosed that they have no financial relationships related to this article.



Both the physiologic changes that occur and the multitude of feelings experienced by the patient are highly individualized at the end of life. Nursing care is crucial for creating a peaceful end-of-life experience. Family—a term that includes all significant others—is an important part of end-of-life care. The goal isn't to optimize care by using the most cutting-edge, advanced treatment because this frequently results in overtreatment. Rather, the goal at the end of life is to mollify distressing symptoms through the judicious use of comfort measures to enhance quality of life (QOL) and achieve a peaceful death.1

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Focusing on QOL

Mr. S is an elderly gentleman in his 70s. Full of life, he's a storyteller and a spiritual man. He enjoys traveling and spent most of his retirement taking pictures of different cities and countries with his wife of 40 plus years. Ten years before this admission, Mr. S was resuscitated after a cardiopulmonary arrest. At that time, he was placed on life support and not expected to survive. Mr. S's care team informed his family of a grim prognosis, which included discussion of ventilator dependence, a persistent vegetative state, and withdrawal of life support. His family was faced with a hard decision: Do we remove the ventilator or do we continue to seek aggressive treatment? In this case, his family made the decision to withdraw the ventilator. Although atypical, Mr. S lived an additional 10 years with the chronic disease that led to his initial cardiopulmonary arrest.

The CDC uses a broad definition of QOL based on the World Health Organization's (WHO) Quality of Life Assessment. QOL is a multidimensional, subjective appraisal of both positive and negative facets of life. It's typically individualized and may include, but isn't limited to, aspects of culture, spirituality, health, wellness, job, family, home, and varied other components.2

The last 10 years of Mr. S's life focused on quality, as his family knew that his underlying condition was incurable. He was a former smoker and had been diagnosed with chronic obstructive pulmonary disease (COPD), which often results in decreased QOL, functional limitations, and reduced exercise capacity due to dyspnea.3,4 COPD is a chronic lung condition that typically has a slow progression and a long duration, similar to other chronic diseases. The WHO states that chronic diseases, such as heart disease, stroke, cancer, chronic respiratory diseases, and diabetes, account for 63% of all deaths.5 In 2008, 36 million people died from some type of chronic disease and 9 million of those individuals were age 60 or younger. For Mr. S, QOL meant learning to drive his car again. He hadn't driven his car in many months due to the multitude of medications he was taking to prevent seizures and control pain and other distressing symptoms. QOL also meant taking a trip to Europe, oxygen tank in tow, where he could photograph ancient architecture and cathedrals.

It's our duty as healthcare providers to strive to improve the QOL for patients facing the end of their lives. Living with a serious illness impacts all aspects of life, including physical, psychosocial, spiritual, and financial components. This impact isn't only experienced by the patient, but his or her support system as well. The Peaceful End-of-Life Theory conceptualizes absence of pain, experience of comfort, experience of dignity and respect, feelings of being at peace, and closeness to significant others.1 It highlights the relief of discomforts and peaceful contentment. It also addresses feelings of peace, calmness, and harmony, providing freedom from anxiety, restlessness, worry, and fear. Of utmost importance is closeness to significant others and feeling connected to other human beings who care. This theory isn't specifically focused on the instance of dying itself, but rather it defines peaceful and meaningful living during the time that remains for those near the end of life.

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The importance of palliative care

Palliative care is an abstract concept that many find difficult to grasp. It's both a philosophy of care and an organized structure of care that expands on the traditional medical model of treatment by encompassing a holistic approach. Care is patient centered and encourages family participation. Ideally, it begins at the time of a life-altering diagnosis and continues through the end of life. The goal of palliative care is to improve the patient's QOL through holistic relief of suffering via symptom management. Symptom management extends beyond ameliorating pain and includes symptomatic relief of constipation, nausea, vomiting, dyspnea, anxiety, delirium, fatigue, and depression.6

Palliative care encompasses a focus on comfort in conjunction with other appropriate forms of medical therapies.7 Hospital-based palliative care is a crucial service because hospitals remain the place of death for many.8 As the population continues to age at an exponential pace, individuals age 65 and over are projected to account for 20% of the total United States population by 2030. The annual mortality in the United States is approximately 2.5 million. Evidence suggests that most individuals value a home death, however, 53% die in hospitals and 24% die in nursing homes.6,9,10 Furthermore, of those who die in the hospital, 20% die while in the ICU.

Although palliative care and end-of-life care are often considered together, they're two distinct services, and it's important to understand the difference. Palliative care encompasses a team approach to care coordination and parallels aggressive or conventional medical treatment. End-of-life care focuses primarily on comfort when a cure is no longer feasible. Moreover, it's important to understand that although all terminal care is considered palliative care, not all palliative care is considered terminal care.

After a patient has been given a terminal diagnosis, the care team must help the patient establish goals of care, his or her wishes for treatment, and if he or she has an advance directive in place. All appropriate care options should be presented to the patient, with the risks and benefits of each thoroughly explained.

During the 10 years following his cardiopulmonary arrest, Mr. S was diagnosed with prostate cancer. It was detected early, which offered curable treatment options.11 His oncologist recommended radiation treatment, and Mr. S continued to pursue and improve his QOL. Although radiation is a curative treatment, it may also be part of palliative care when its goal is to reduce the size of tumors that cause distressing symptoms and enhance QOL.12,13

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Other considerations

As patients progress through their disease trajectory, healthcare providers often present hospice services when 6 months of life or less is anticipated. After a decision for hospice is made, the overarching goal is no longer curative treatment; rather, treatment is directed toward pain and symptom management with a focus on comfort. Like palliative care, hospice care is provided by an interdisciplinary team that includes the healthcare provider (physician, advanced practice nurse, clinical nurse, or a combination) and dedicated or ad hoc participation of nurses, social workers, case managers, chaplains or other spiritual guides, ethicists, allied therapists, pharmacists, and other clinicians such as child-life specialists (when appropriate). The team can provide a combination of direct clinical expertise for pain and symptom management; facilitate patient, family, and physician communication; and coordinate necessary resources.

In addition to traditional medicines that can treat symptoms often associated with end of life, such as pain, nausea, vomiting, constipation, anxiety, fatigue, anorexia, and confusion, a consideration for alternative and complementary therapies exists. Such alternatives include, but aren't limited to, acupuncture, aromatherapy, massage, meditation, music therapy, art therapy, and journaling.

When traditional approaches fall short of adequate symptom relief, an alternative plan should exist for palliative sedation. This encompasses the judicious use of medication to induce sedation to alleviate a dying patient's severe distress that can't be controlled despite other aggressive measures. The goal of palliative sedation is to relieve intractable distress, not to hasten death. Palliative sedation should follow national codes of ethics and ethical guidelines for palliative medicine.1417 When considering palliative sedation, the care team should thoroughly educate the patient and family regarding “wake-ups” and the potential inability to do so. A contract may be considered with informed consent. Additionally, those providing palliative sedation, including physicians, nurses, or pharmacists, need to evaluate their personal code of ethics and uphold their professional ethical duties when participating in this approach to end-of-life management.

Ten years after his initial cardiopulmonary arrest, Mr. S's health status began to markedly decline. His wife and son took him to his primary care physician after he experienced a dramatic change in mental status and were informed that the end was very near. They sought an inpatient hospice facility, which allowed for continual I.V. medication to alleviate his worsening dyspnea, increased secretion, and unbearable pain. This setting allowed for family presence and closeness. As memories and stories were shared, Mr. S experienced moments of lucidity. His wife was given caregiver reprieve knowing that the healthcare team she trusted was providing quality care. Mr. S ultimately experienced comfort and dignity as he died, surrounded by those he loved. It's often said that each person gets one birth and one death, which should enable the family to reflect on each with a feeling of gratitude.

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Role of the nurse leader

For those nurse leaders who have staff caring for patients at the end of life, it's important to recognize the skill set of your staff. Ample educational opportunities should be provided to give staff the foundation to support dying patients and their families. Staff members should be honest about what to expect as death approaches while fostering the ability to maintain hope.

As the patient advocate, nurses need to enhance communication between the interdisciplinary team and the patient and family. Communication skills are the basis for providing a supportive end-of-life experience.18 The direct care nurse will often be required to communicate a plethora of information to numerous family members with varied understanding of the situation. In fact, it may be beneficial for the nurse to designate one primary spokesperson for the family—the medical power of attorney, if one exists. Those who care for dying patients need to be honest and straightforward and have a willingness to discuss death and its associated symptoms. Staff members should be able to demonstrate sensitivity when delivering bad news in conjunction with the ability to listen to the patient and family as they ask questions, express grief, and seek closure.

When conducting a discussion about the end of life, establish the patient's and family's understanding of the disease. Perhaps discussing recent health-related events and how they've impacted the patient's QOL provides a segue into the end-of-life discussion. Delving into the patient's belief system is often necessary to gain a comprehensive understanding. Provide the medical synopsis in simple language, ask the patient or family to repeat it back to verify the grasping of such information, and pause for questions.19

The nurse manager needs to be able to detect compassion fatigue in his or her staff and coordinate opportunities to debrief after difficult death experiences.20 Such resources for the frontline staff may include unit-specific memorial services, private appointments with pastoral care services, employee-assistance programs, and the option to step away from an emotional situation that impairs the ability to provide quality care to patients and their families. The nurse manager should be aware that caring for a patient at the end of life may consume considerably more caregiver hours and have a contingency plan for the care of other patients. It's important to acknowledge that care of the dying patient isn't only patient focused, but also family oriented.

Organizations that care for dying patients need to consider bereavement support for the family after the patient dies. Traditionally, hospice services incorporate up to 13 months of follow up with the family. This could be in the form of cards, phone calls, and support groups at varied intervals after the loss of their loved one. Furthermore, respite care for the patient's primary caregiver may be offered to relieve the burden of caregiving.21 One survey reported that 95% of caregivers felt that hospice was beneficial, but the task of caring for the terminal patient at the end of life negatively impacted their own QOL.18

In closing, caring for patients at the end of life is both physically and emotionally taxing for caregivers and staff. The nurse manager should be astute in assessing for such fatigue among the staff and creating a safe, supportive environment that facilitates opportunities for open, honest dialogue. This allows both staff members and caregivers moments to reflect on the lives of their patients and loved ones.

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