About the Author

Angeline Bushy, PhD, RN, CNS, CHN is the Bert Fish Endowed Chair at the School of Nursing, at the University of Central Florida. She has practiced in a variety of rural health care settings, including clinical as well as educational settings. She has published extensively, including three textbooks, and presented various aspects of rural healthcare delivery at numerous national and international conferences.

Shelda L. Shank, RN, BSN, PHN completed her Baccalaureate Degree in Nursing and public health certificate at Azusa Pacific University. She is a member of the International Association of Forensic Nurses (IAFN) and an academic member of the American Botanical Council. She is the Nurse Supervisor of the Instructional Systems Development section of the National Center of Continuing Education. In this capacity, she is responsible for directing the activities of this department, selecting qualified, credentialed authors for the courses offered by the National Center as well as advising staff of required course design and criteria. Ms. Shank has over 18 years of extensive experience in publishing courses in continuing education for health care professionals with the National
Center.

Purpose and Goals

The goal of this course is to present the essential concepts of palliative care, with emphasis on emotional, psychosocial, spiritual and family issues; pain management and the rights of the patient to self determination and decision making are also discussed.

Instructional Objectives

Upon completion of this course, the
motivated learner will be able to:

1. Define and characterize palliative care.

2. State the role of palliative care and symptom management in end-of-life care.

3. Outline ways to address the psychosocial and spiritual concerns of the dying client.

4. Define pain and pain tolerance.

5. List factors that influence pain perception, in respect to culture, gender and age.

6. Outline non-pharmacologic intervention options available for pain control and palliative care needs.

7. Name the ways that advanced directives play in rights to self determination and enhancing the quality of life, at the end of life.

Introduction

Palliative Care: What is it? How does it relate to life and end-of-life issues? Many healthcare professionals (HCPs) subscribe to the notion that death is simply another dimension of life – a transition of living. This perspective of death as a major life transition should be the focus of care for a client in the last stages of life.

Palliative care is care which is intended to relieve the symptoms of a disease that cause the patient to suffer, but which is not expected to cure the disease. This continuing education program focuses on the activities of health professionals that are involved in providing this type of care. For this program, we will focus on assisting and providing support to a person who is in the end stage of life, as well as to his or her family system. Please note that in all cases it is the client and their family system that establish priorities for care: the role of the health professional is to support the family system in achieving their unique goals. The term “family system” is broad and encompassing: it includes the client’s significant other(s), immediate and extended family members, friends, and in some instances even the community. Each person defines who is included in the family system, and this group will vary from person to person.

Health professionals in general, direct caregivers in particular, are in an ideal position to assist, and even provide alternative perspectives to, a person in their care, and to allow their client to be open about feelings as well. Opportunities for meaningful interactions can be especially evident when administering personal care to the client in their home. A certain intimacy can be established while assisting a person with the usual and ordinary things of life such as preparing meals, doing housekeeping activities, and completing personal care.

An expected outcome of this course is that healthcare professionals will learn to be more comfortable with patients with terminal illness and be able to put into practice effective and compassionate end-of-life care.

Quality Palliative Care

Palliative care and symptom management are the essence of care for a client experiencing end stage disease symptoms. They are directed toward promoting a high quality of life, relief of suffering, and supporting a peaceful death. They encompass the active and total care of people whose disease is not responsive to curative treatment.

Diagnostic procedures and special treatments such as chemotherapy, radiation, nutritional augmentation, pharmacotherapies, and in some cases even surgery, may have a place in palliative care. These interventions are ordered by the physician if the benefits in providing relief of symptoms outweigh the disadvantages of not having it. The goal of any intervention in palliative care is to improve the quality of life for the person by managing the symptoms as opposed to controlling or curing the disease.

Palliative care focuses on the relief of suffering when the underlying disease cannot be cured. Suffering is described as a state of severe distress that often is associated with events that threaten a person’s intactness as a human being. Hence, suffering is viewed more broadly than simply experiencing physical pain. Rather, the whole person experiences suffering: having pain in the mind and spirit as well as one’s body. Moreover, the physical symptoms will vary with different diagnoses, affected body systems, progression of the end stage disease, and impact of these factors on the individual person. For example, nearly 75% of people with cancer experience pain at some time during their illness. But other conditions produce pain as well, including heart disease, AIDS, decubitus ulcers, and neuropathy. Different interventions may be needed to manage the pain experienced by different clients with different diseases.

In addition to pain, there may be other physical symptoms experienced by the client receiving palliative care. For example:

▲ Neurological symptoms including seizures, paralysis, or changes in mental status such as lethargy, confusion, agitation, or hallucinations; sensory and perceptual changes.

▲ Cardiovascular symptoms such as edema, syncope, hemorrhage, or angina.

▲ Respiratory symptoms such as dyspnea, cough, or congestion.

▲ Gastrointestinal symptoms such as nausea, vomiting, anorexia and cachexia, constipation, diarrhea, prolonged or continuous hiccups.

▲ Genitourinary symptoms such as incontinence, retention or dysuria.

▲ Musculoskeletal symptoms such as weakness, fatigue, pathologic fractures, contractures and spasms.

▲ Integumentary (skin and mucous membranes) symptoms such as pressure ulcers, ulcerative lesions, dry mouth, oral lesions, infections and pruritus.

Consequently, in addition to assisting with or providing routine activities of daily living during care, special therapies may be ordered by the physician to relieve or manage symptoms. For instance, nutritional, physical, occupational, or speech therapy may be ordered for persons with a chronic disease or debilitating condition to maintain a certain quality of life during the end stages of the condition. Such interventions may also help to maintain a greater degree of mobility or enable one to participate in activities of daily living for a longer period of time. Medical supplies and durable medical equipment also can be helpful in palliative care and symptom management, such as hospital beds with special features; oxygen, intravenous, and enterostomy therapies; and wheelchairs and other comfort devices. In addition to improving comfort, durable equipment and medical supplies can help to provide a safer environment for the client as well as caregivers.

Management Of Specific Symptoms

Symptom management in many cases is the most important activity in providing care to a client. Symptoms will vary from person to person, and his or her particular health problems or diagnosis. Likewise, the symptoms will change in intensity, frequency and duration as the disease progresses. Carefully listening to what the client is telling you, observing and assessing for changes from the baseline status, then intervening early on can go a long way to managing symptoms in the client.

Symptoms encountered in palliative care that cause an intense degree of discomfort include nausea, vomiting, anorexia, pain, skin breakdown and decubitus ulcers, urinary and bowel irregularities, and respiratory problems. If these cannot be managed at home, short-term inpatient care may be provided for symptom control, respite care, or terminal care (when death is imminent).

Emotional and Communication Support

Health professionals (HCPs) providing palliative care must be sensitive to the reality that depression, anxiety, and sleep disorders may be present and may cause physical or emotional symptoms. Furthermore, unique psychosocial issues accompany terminal illness. Emotional responses such as denial, anger, sadness, acceptance, and hope may vary from day to day and may differ between the client and the various members of the family.

Coping skills to deal with the loss of the loved one also may be limited, or dysfunctional, in some family systems. Moreover, even family systems that have effective coping abilities may find relationships strained at some time or another during a terminal illness.

Obviously, one of the most critical components of palliative care is effective communication between and among the client, caregivers and family members. Caregivers involved in terminal care must be aware of the opportunity and carefully listen for an opening for communication on the part of the client. Most dying persons want to talk about the process of their own death with loved ones. Oftentimes, family members feel extreme discomfort with the topic, and are unable to participate in discussions of death and dying. In these situations, health professionals can lead the way and assist the family system to feel that it is okay to talk about death and dying within the family.

Many times, actually saying the words “death” and “dying” provides an opening for communication to begin on the topic. If the caregiver is comfortable with those words, that in and of itself can help others to feel more comfortable talking about the highly sensitive topics of death, loss and grieving. In one case Mary, 72 years old, had end stage cardiac disease and was having trouble making a decision about continuing to live at home. Mary wanted to remain at home but her family was very concerned about her living alone. When asked what she believed their real concern to be Mary said, “I think my family is afraid they will come into my home and find me dead.” When asked if she was afraid to die at home or even alone, her response was, “Heavens, no! This is where I want to spend my last days. I want to die where I lived for the last 50 years with my husband and children. My husband died in our house 7 years ago. This is where I belong.”

Her case manager informed Mary, the client in this case, that she was capable of making her own decision. To help reduce the family’s anxiety, Mary agreed to carry a portable phone with automated dialing for quick access to her family and doctor. This strategy reassured the family, and it allowed Mary to live at home even with the seriousness of her illness. In the end, upon making a routine home visit, Mary’s nurse found her deceased in bed. In essence, the care plan for this woman focused on assisting her to live and die in the manner she desired.

Meeting the Spiritual Needs of the Dying

Health professionals (HCPs) providing palliative care must be sensitive to the reality that depression, anxiety, and sleep disorders may be present and may cause physical or emotional symptoms. Furthermore, unique psychosocial issues accompany terminal illness. Emotional responses such as denial, anger, sadness, acceptance, and hope may vary from day to day and may differ between the client and the various members of the family.

Coping skills to deal with the loss of the loved one also may be limited, or dysfunctional, in some family systems. Moreover, even family systems that have effective coping abilities may find relationships strained at some time or another during a terminal illness.

Obviously, one of the most critical components of palliative care is effective communication between and among the client, caregivers and family members. Caregivers involved in terminal care must be aware of the opportunity and carefully listen for an opening for communication on the part of the client. Most dying persons want to talk about the process of their own death with loved ones. Oftentimes, family members feel extreme discomfort with the topic, and are unable to participate in discussions of death and dying. In these situations, health professionals can lead the way and assist the family system to feel that it is okay to talk about death and dying within the family.

Many times, actually saying the words “death” and “dying” provides an opening for communication to begin on the topic. If the caregiver is comfortable with those words, that in and of itself can help others to feel more comfortable talking about the highly sensitive topics of death, loss and grieving. In one case Mary, 72 years old, had end stage cardiac disease and was having trouble making a decision about continuing to live at home. Mary wanted to remain at home but her family was very concerned about her living alone. When asked what she believed their real concern to be Mary said, “I think my family is afraid they will come into my home and find me dead.” When asked if she was afraid to die at home or even alone, her response was, “Heavens, no! This is where I want to spend my last days. I want to die where I lived for the last 50 years with my husband and children. My husband died in our house 7 years ago. This is where I belong.”

Her case manager informed Mary, the client in this case, that she was capable of making her own decision. To help reduce the family’s anxiety, Mary agreed to carry a portable phone with automated dialing for quick access to her family and doctor. This strategy reassured the family, and it allowed Mary to live at home even with the seriousness of her illness. In the end, upon making a routine home visit, Mary’s nurse found her deceased in bed. In essence, the care plan for this woman focused on assisting her to live and die in the manner she desired.

Pain Management: Medical and Alternative Therapies

Pain management is an important component of palliative care. In recent years major contributions have been made to nursing research literature regarding protocols for pain relief. The holistic view of pain and its’ management includes attention on the part of the caregiver to physical, emotional, social, and spiritual needs. Adequate availability and doses of analgesics, including narcotics; around-the-clock scheduling; and the use of co-analgesics and other non-drug interventions have made the control of pain an attainable goal. Throughout the care process, the client is central in making decisions about pain management. Judicious use of prescriptive and non-prescriptive drugs can greatly enhance the quality of life by providing relief from pain and other discomforts such as nausea, vomiting, and diarrhea.

Analgesia includes not only drug therapy, but also non-pharmacological interventions such as imagery, massage, therapeutic touch, music therapy, and meditation. The goal of therapy is to keep the client comfortable, as defined by the client, without overly clouding mental and cognitive functions necessary to the client’s participation in the activities of daily life. Fears of addiction to narcotics frequently are a concern to clients and families as well as healthcare professionals. Thus, teaching about pain management and facilitating the expression of beliefs about the use of medications are critical interventions if these are to be used effectively in palliative care and symptom management.

In fact, the American Pain Society suggests that pain rating be treated as the fifth vital sign (in addition to blood pressure, pulse, respiration, and temperature). Nurses can help improve and manage this aspect of care through assessment, planning, intervention, education and counseling of the patient and family system. As a basic scientific definition, pain is a sensation caused by some type of noxious stimulus. From the behavioral aspect, pain is a pattern of responses that function to protect an individual from harm.

The World Health Organization (WHO) has devised a simple, widely used, and effective approach to pharmacotherapy for cancer pain. The five essential concepts in the WHO approach to drug therapy of pain are:

• By the mouth.

• By the clock.

• By the ladder.

• For the individual.

• With attention to detail.

It has been shown to be effective in relieving pain for approximately 80-90 percent of patients with cancer. Called the WHO Pain Ladder, this approach incorporates the concept of an analgesic ladder, a rational, stepwise approach to pain management. For details contact the WHO at www.who.int/cancer/palliative/painladder/en/

Measures of client comfort and function should be visible to caregivers as well as members of the family system on a documentation record, such as a bedside flow sheet specifically designated for rating pain. This information will provide an assessment of the success of the pain control regimen and also remind the caregiver that ratings above a specified number require intervention. Whether or not the agreed-upon goal has been achieved should also be routinely reported at the change of shift, along with other information about the person’s status such as vital signs.

Influencing Factors

Certainly people of all ages are capable of feeling pain. Two particular age groups with special needs include children and older adults. Nonverbal children will not be able to articulate the presence of pain, nor describe its characteristics. The practitioner must be alert to nonverbal cues such as excessive crying, grimacing, and restlessness. The other age group with special needs includes the older adult. Many older adults assume that pain is a natural part of aging; this is untrue. What is true is that the incidence of disease and illness increases as we age and pain is a common accompanying symptom. Practitioners need to inquire about and then explore older adults’ areas of pain. Treatment of the diseases and illnesses present is of utmost importance in achieving pain relief.

Emotional state affects pain. Any additional stressors can aggravate the pain experience. The interconnectedness of thoughts, feelings and beliefs plays a part in pain perception from an emotional standpoint. Research has shown that people experience more pain when they focus on it, are told to expect one thing but experience something different, expect a high level of pain, and are tense and under stress. It has been theorized that structures in the brain are closely involved with the emotional aspects of pain perception. It is believed that stimuli are filtered through the limbic-hypothalamic system and that the frontal cortex influences rational interpretation and response to pain. Though physical pain reception is a universal human phenomenon, people experience different pain thresholds and tolerances. Pain tolerance refers to the lowest level of stimulation at which a person will stop or seek to stop the stimulus. It is very individualized, different from person to person and from situation to situation. Many times anxiety is also present with pain, causing an increased perception of pain intensity. Other psychological factors affecting pain include fatigue and depression.

In respect to gender, in the American culture men have typically been socialized to deny or conceal their pain, while women are often encouraged to be demonstrative with their reaction to pain. Some researchers have theorized that estrogen is instrumental in regards to modulation of pain sensitivity. Others have demonstrated that the physical and emotional experiences of pain are similar for both genders, while it is the expression that often differs. Nonetheless, very few studies support gender differences in pain threshold.

Another aspect of culture is the patient’s environment. When assessing for pain consider factors such as: Is the patient generally vocal or quiet and does he seek and trust the healthcare environment? For the patient who is quiet or distrustful of health care, you may need to actively elicit more information and work to establish trust before you can get an accurate pain assessment.

Family and social support are usually helpful to patients when dealing with pain. Often patients have their own strong support systems already established and find this helps them to manage the emotional aspect of pain. Sometimes the practitioner needs to assist patients to utilize or even establish support systems.

Many people assume that those who experience pain like to be alone but this is not always true, particularly for those that experience chronic or episodic, recurring pain. Studies have shown that when people do not have adequate social support, or perceive insufficient support, they have more complaints of pain and reduced psychological well-being. Formal support groups have been established for many circumstances and nurses can be instrumental in connecting patients to these resources.

Non-Pharmacologic Interventions

Besides medications there are also non-pharmacologic options to control pain. Most often they are used to complement pharmacologic options. Advantages of using non-pharmacologic methods include the fact that many do not require a prescription or any special equipment. However, always make sure an intervention is appropriate and safe for each patient situation before implementation.

Non-pharmacologic interventions include relaxation and guided imagery, which are often used concurrently. Relaxation can be as simple as focusing on one’s breathing to control tachypnea or mentally concentrating on a pleasant thought or scene. Patients can also be taught to progressively contract and then relax various muscle groups, usually in a sequential pattern, such as from neck to toes. Meditation is a form of relaxation. Relaxation and guided imagery are thought to counterbalance the “fight or flight” response the body often activates in response to pain. As a result of using these techniques the body often experiences a reduction in skeletal muscle tension, decreased vital signs, lowered metabolic rate, and reduced oxygen consumption.

Cutaneous stimulation can be used to eliminate pain as well. Techniques that use cutaneous stimulation are massage, acupressure, acupuncture, hot and cold applications, and transcutaneous electrical nerve stimulation (TENS).

Lastly, never underestimate the value of education. A well-informed patient is usually best able to cope with his pain. The nurse should not be the only person in the nurse-patient relationship with the proper information on pain and its treatment. Certainly, in today’s information explosion society, patients may present with a plethora of information; however, a patient with a lot of information is not synonymous with an educated patient. Beyond instructing patients about pain and treatment options, nurses may need to clarify and correct misinformation.

New Standards and a New Direction

The Standards outlined below were developed by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) as guidance on pain management for healthcare organizations. The healthcare organization addresses care at the end-of-life. Patients facing death need respectful, responsive care. The responsibilities of caregivers include managing pain aggressively and effectively, and responding to the psychological, social, emotional, spiritual, and cultural concerns of the patient and the family.

Additional information on these standards may be obtained from Joint Commission on Accreditation of Healthcare Organizations, One Renaissance Boulevard, Oakbrook Terrace, IL 60181 USA Phone: 630-792-5000, or from their Web site at www.jcaho.org

For an expanded course on pain management techniques order course # 2004 Pain Management, 5 Contact Hours.

The Role of Advance Directives

In recent years, it has been increasingly recognized that an individual has the right to self-determination not only with regard to activities during life, but also in choosing services that will enhance the quality of life during her final days. The person may have chosen an executor, made decisions regarding disposition of personal property, and provided loved ones with information about specific concerns and intentions. An important part of this process is the preparation of advanced directives that may include a living will and a durable power of attorney for health care decision-making in the event of incapacitation. If the person decides that he does not want to be maintained by gastric feeding or mechanical ventilation, then those decisions can be conveyed to the physicians and others involved in his care.

Many individuals at the end of life have reported considerable comfort in knowing that they have expressed their wishes and are to be allowed a death with dignity according to those wishes. Healthcare professionals can assist their patients to achieve this level of peace by encouraging the preparation of advance directives.

Nurses are committed to providing care to the whole person throughout the life span, and to maintaining a holistic perspective on the needs of the person in their care. What could be more important than gathering all the nurse’s personal strengths and professional skills to provide caring support to those facing one of life’s greatest transitions?

Key Points in Palliative Care

In 2007, The Institute for Clinical Systems Improvement (ICSI) released new guidelines for treatment of palliative care issues. Major recommendations include clinical highlights and key points for healthcare professionals including:

• Palliative care planning should begin early in the patient’s journey of a progressive, debilitating illness. A key question for providers is “would you be surprised if the patient died within two years?”

• Where palliative care consultation is available, referral to this service should be done early on in the patient’s care.

• Where palliative care services are not available, primary care providers should begin palliative care planning early.

• Health care providers should initiate palliative care conversations with their patients.

• Health care providers should complete a systematic review and document patients’ goals for care and advance directives.

• Pain and physical suffering are common in this patient population, but there are nonphysical areas of suffering that also need to be addressed. These include cultural, psychological, social, spiritual, religious, existential, ethical and legal issues.

• The ability to address these issues depends, at least partially, on the quality of communication with patients and families. Setting realistic goals of care and providing realistic hope is essential.

• In the delivery of palliative care, aggressive interventions may continue with an increased focus on symptom management

• Health care providers play an important role in the grief and bereavement processes.

• General considerations clinicians should use to identify patients who would benefit from palliative care planning include:

• Disease progression, especially with functional decline

• Pain and/or other symptoms not responding to optimal medical treatment

• Need for advance care planning

• Guideline met for hospice eligibility, but “not ready”

Conditions that may prompt palliative care planning include debility/failure to thrive, cancer, heart disease, pulmonary disease, dementia, liver disease, renal disease, neurologic disease such as stroke, Parkinson’s, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS). For more information on these conditions refer to the original guideline document.

Many residents in long-term care facilities have these conditions and should be assessed for palliative care.

Initiate Palliative Care Discussion

The ability to frankly discuss and plan with patients and families is as important as any other medical interventions. Practice and experience with discussions about end-of-life decisions and palliative care will improve providers’ skill and comfort levels.

Many providers feel they lack confidence and experience in discussing with patients the issues and decisions that come with having a progressive, debilitating illness – specifically recommendations about palliative care and hospice services.

There are several excellent mnemonics available to help providers increase their knowledge, practice examples of these discussions, and generally obtain a better understanding of the emotions, questions and problems that may arise with patients and families at this time in their lives.

The mnemonic below can be used to help prompt a successful conversation with patients and families:

• ABCDE (Advance preparation, Build a therapeutic environment/relationship, Communicate well, Deal with patient and family reactions, Encourage and validate emotions)

Advance preparation: Obtain the patient’s medical information and test results, if possible, so that you are fully aware of the situation. Mentally rehearsing the way you wish to present the information and options can give you a sense of how the conversation may go. Remember to individualize your approach for each given patient based on how much they know at that point and how they prefer to receive information. Make sure that you have an appropriately private location in which to have the discussion.

Build a therapeutic environment/relationship: Try to find out how much the patient and family understands, how they want to be told (bluntly, gently, etc.), and how much they want to know at that time.

• “If this condition turns out to be something serious, are you the kind of person who likes to know what is going on?”

• “Would you like me to tell you the full details of the diagnosis?”

• “If your condition is serious, how much would you like to know?” If the patient indicates that he/ she does not want any information, it is important to “leave the door open.” For example you may say,“That’sOK. If you change your mind, at any time, please feel free to talk to me or one of my colleagues.”

Have family members or friends present as per the patient’s preference, and take time to learn names and relationships of each support person present. Use touch and humor where appropriate, taking into consideration your relationship with the patient. Reassure the patient of your availability, set up follow-up appointments, and contact other providers about the situation where appropriate.

Communicate well: Ask the patient for any questions. Speak truthfully but compassionately and avoid using medical terms or euphemisms. Say the words cancer, dying, death, etc. Don’t rush the process; allow time for silence, tears and questions. Remember that the patient may not retain much of the information given past that of the diagnosis or prognosis. Repeat important points and write things down. Think out loud; help the patient and family feel they are part of the team.

Deal with patient and family reactions: Be sensitive to the emotional reactions of the patient and family. Recognize that denial, blame, intellectualization, disbelief, and acceptance may be present to varying degrees and time frames. Watch for signs of depression and suicidality in subsequent visits. Be empathetic. Crying may occur but make sure that your tears are empathic in nature and not reflective of personal issues on your part. There may be anger from the patient and family about care received from you or another colleague; resist becoming defensive or argumentative about these issues. Try to deal with that particular patient’s and family’s cultural and ethnic norms.

• “I was probably raised differently than you. Can you tell me how your family deals with these situations?”

Encourage and validate emotions: Offer realistic hope. This may not involve cure, but can encourage symptom control, dignity and peace at the time of illness/death. Discuss treatment options and arrange for follow-up to put those options into action. Talk with the patient about what this means for him/her, and what needs outside of the traditional medical scope he/she may have.

• “I know this is not what you wanted to hear.”

• Don’t say, “There is nothing more we can do;” instead say, “What we are going to focus on now is (comfort, pain relief, etc.).

Patient and family reactions to serious illness and decisions about end-of-life care are influenced by numerous factors. For more information this Guideline can be accessed on the National Guideline Clearinghouse website, key search Palliative Care.

Web Sites, Organizations and Projects

AgeNet - bridges the distance between aging parents and adult children by providing actionable information about products and services.
www.caregivers.com


Before I Die - A Web site covering a program that explores the medical, ethical, and social issues surrounding end-of-life care in America today.
www.wnet.org/bid/index.html

Compassionate Friends - assists families in the positive resolution of grief following the death of a child. www.compassionatefriends.org   

Last Acts - a call-to-action campaign to improve care at the end of life, bring death-related issues out in the open and help individuals and organizations pursue better ways to care for the dying. www.lastacts.org

Legacy.com - a way to celebrate life stories in words and pictures for now and for the future.

Medicare Rights Center - non-profit organization offers answers to questions about Medicare, describes education and services, and provides news and publications.www.medicarerights.org

National Family Caregivers Association - a grassroots organization created to educate, support, empower and speak up for those who care for chronically ill, aged or disabled loved ones. www.thefamilycaregiver.org

National Hospice and Palliative Care Organization - nonprofit organization representing hospice and palliative care programs and professionals in the U.S.
www.nhpco.org

The Palliative Page - a one-stop resource for all things online related to palliative care. http://homepage.dtn.ntl.com/johnsweeney

Toolkit of Instruments to Measure End-of-Life Care - a comprehensive annotated bibliography of instruments to measure the quality of care at the end of life. http://gwis.circ.gwu.edu/cicd/toolkit/toolkit.htm

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