PALLIATIVE CARE

01 ЗАГАЛЬНІ ПРИНЦИПИ ПАЛІАТИВНОЇ ДОПОМОГИ

 

 
NURSING CARE AT THE END OF LIFE

 

Definition of Palliative Care

“The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.

Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care with consideration of patient/family needs, preferences, values, beliefs, and culture. Evaluation and treatment should be comprehensive and patient-centered with a focus on the central role of the family unit in decision making. Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death. Palliative care aims to guide and assist the patient and family in making decisions that enable them to work toward their goals during whatever time they have remaining. Comprehensive palliative care services often require the expertise of various providers to adequately assess and treat the complex needs of seriously ill patients and their families. Leadership, collaboration, coordination, and communication are key elements for effective integration of these disciplines and services (NCP 2004).”

This definition of palliative care is consistent with the definition in use by the NQF and the Centers for Medicare and Medicaid Services (CMS), which follows:

 

“Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice (Federal Register 2008).”

Patient Populations Served

For the purposes of this document, the term life-threatening or debilitating illness is assumed to encompass the population of patients of all ages and a broad range of diagnostic categories, who are living with a persistent or recurring condition that adversely affects their daily functioning or will predictably reduce life expectancy. Based on this definition, the patient population refers to the following:

 

■         Children and adults with congenital injuries or conditions leading to dependence on life-sustaining treatments and/or long-term care with support by others with the activities of daily living.

■         People of any age with acute, serious, and life-threatening illnesses (such as severe trauma, leukemia, or acute stroke), where cure or reversibility is a realistic goal, but the conditions themselves and their treatments pose significant burdens and result in poor quality of life.

■         People living with progressive chronic conditions (such as peripheral vascular disease, malignancies, chronic renal or liver failure, stroke with significant functional impairment, advanced heart or lung disease, frailty, neurodegenerative disorders, and dementia).

■         People living with chronic and life-limiting injuries from accidents or other forms of trauma.

■         Seriously and terminally ill patients (such as people living with end-stage dementia, terminal cancer, or severe disabling stroke), who are unlikely to recover or stabilize and for whom intensive palliative care is the predominant focus and goal of care for the remainder of their lives.

Specialty-Level Palliative Care  and  Palliative Care  in Primary Treatment Settings

Palliative care is both a general approach to patient care that ideally should be routinely integrated with disease-modifying therapies and a growing practice specialty for appropriately trained healthcare professionals whose expertise is required to optimize quality of life for those with life-threatening or debilitating chronic illness. Primary practitioners in the routine course of providing health care are expected to provide basic elements of palliative care (e.g., pain and symptom assessment and management, advance care planning). In other cases, complexity may determine that the patient or his/her family requires the services of palliative care specialists. Specialist palliative care providers are those clinicians who have received formalized specialty training and appropriate credentialing in the field and whose work is largely _{or entirely involved with palliative care.}

It is an expectation, fostered by these clinical guidelines, that palliative care services delivered by all healthcare professionals within the scope of their disciplines and care settings will rise to the level of “best practices” to meet the needs of their patients. The specialty of palliative care (programs and professionals committed largely or entirely to the delivery of palliative care), like other medical specialties, requires defined areas of expertise, skill, and self-regulation. In healthcare settings without direct access to palliative care specialty services, resources should be sought through, for example, telemedicine or other forms of remote consultation.

 

These clinical guidelines do not substitute one set of services (palliative) for another set of services (curative or disease-modifying), but rather create an environment in which the needs of the patient, based on a comprehensive assessment, are fully considered. Only then can a reasonable determination be made of what mix of services is required to meet the physical, psychological, social, practical, and spiritual needs of patients and their families. Good health care requires continual reappraisal of the benefits and burdens of therapies, and a proactive engagement with the philosophy of palliative care supports this fundamental tenet of the practice of medicine.

 

Core Elements of Palliative Care

The World Health Organization (WHO) definition of palliative care provides a foundation and context for palliative care in all settings.

 

World Health Organization Definition of Palliative Care

“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

•    Provides relief from pain and other distressing symptoms;

•    Affirms life and regards dying as a normal process;

•    Intends neither to hasten or postpone death;

•    Integrates the psychological and spiritual aspects of patient care;

•    Offers a support system to help patients live as actively as possible until death;

•    Offers a support system to help the family cope during the patient’s illness and in their own bereavement;

•    Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;

•    Will enhance quality of life, and may also positively influence the course of illness;

•    Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications (WHO 2008).”

World Health Organization Definition of Palliative Care  for  Children

“Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders:

•    Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.

•    It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

•    Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.

•    Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

•    It can be provided in tertiary care facilities, in community health centres and even in children’s homes (WHO 2008).”

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The NCP agreed on the following key elements of palliative care.

■         Patient population: The population served includes patients of all ages experiencing a debilitating chronic or life-threatening illness, condition, or injury.

■         Patient and family centered care: The uniqueness of each patient and family is respected, and the patient and family constitute the unit of care. The family is defined by the patient or, in the case of minors or those without decision-making capacity, by their surrogates. In this context, family members may be related or unrelated to the patient; they are individuals who provide support and with whom the patient has a significant relationship. The care plan is determined by the goals and preferences of the patient and family, with support and guidance in decision-making from the healthcare team.

■         Timing of palliative care: Palliative care ideally begins at the time of diagnosis of a life-threatening or debilitating condition and continues through cure or until death and into the family’s bereavement period.

■         Comprehensive care: Palliative care employs a multidimensional assessment to identify and relieve suffering through the prevention or alleviation of physical, psychological, social, and spiritual distress. Care providers should regularly assist patients and their families to understand changes in the patient’s condition and the implications of these changes as they relate to ongoing and future care and goals of treatment. Palliative care requires the regular and formal clinical process of patient-appropriate assessment, diagnosis, planning, interventions, monitoring, and follow-up.

■         Interdisciplinary team: Palliative care presupposes indications for, and provision of, interdisciplinary team evaluation and treatment in selected cases. The palliative-care team must be skilled in care of the patient population to be served. Palliative-care teams may be expanded to include a range of professionals based on the services needed. They include a core group of professionals from medicine, nursing and social work, and may include some combination of volunteer coordinators, bereavement coordinators, chaplains, psychologists, pharmacists, nursing assistants and home attendants, dietitians, speech and language pathologists, physical, occupational, art, play, music, and child-life therapists, _{case managers, and trained volunteers.}

■         Attention to relief of suffering: The primary goal of palliative care is to prevent and relieve the many and various burdens imposed by diseases and their treatments and consequent suffering, including pain and other symptom distress.

■         Communication skills: Effective communication skills are requisite in palliative care. These include developmentally appropriate and effective sharing of information, active listening, determination of goals and preferences, assistance with medical decision-making, and effective communication with all individuals involved in the care of patients and their families.

■         Skill in care of the dying and the bereaved: Palliative care specialist teams must be knowledgeable about prognostication, signs and symptoms of imminent death, and the associated care and support needs of patients and their families before and after the death, including age-specific physical and psychological syndromes, opportunities for growth, normal and aberrant grief, and bereavement processes.

■         Continuity of care across settings: Palliative care is integral to all healthcare delivery system settings (hospital, emergency department, nursing home, home care, assisted living facilities, outpatient, and nontraditional environments, such as schools). The palliative care team collaborates with professional and informal caregivers in each of these settings to ensure coordination, communication, and continuity of palliative care across institutional and homecare settings. Proactive management to prevent crises and unnecessary transfer are important outcomes of palliative care.

■         Equitable access: Palliative care teams should work toward equitable access to palliative care across all ages and patient populations, all diagnostic categories, all healthcare settings including rural communities, and regardless of race, ethnicity, sexual preference, or ability to pay.

■         Quality assessment and performance improvement: Palliative care services should be committed to the pursuit of excellence and high quality of care. Determination of quality requires the development, implementation, and maintenance of an effective quality assessment and performance improvement program. This requires regular and systematic assessment and evaluation of the processes of care and measurement of outcomes using validated instruments for data collection. The Institute of Medicine has identified six aims for quality healthcare delivery. They include:

† Timely—delivered to the right patient at the right time.

† Patient-centered—based on the goals and preferences of the patient and the family.

† Beneficial and/or effective—demonstrably influencing important patient outcomes or processes of care linked to desirable outcomes.

† Accessible and equitable—available to all who are ieed and who could benefit.

† Knowledge- and evidence-based.

† Efficient and designed to meet the actual needs of the patient and not wasteful of resources. These aims are built around the core need for palliative care to incorporate attention at all times to safety and the systems of care that reduce error. Several activities that have included palliative care outcomes include the Physician Quality Reporting Initiative and the Physician Consortium for Performance Improvement. However, most important is that the NCP endorses the NQF’s 38 Preferred Practices that aim to ensure quality care outlined by domain and corresponding preferred practice.

Models of Palliative Care Delivery

Palliative-care services are appropriate and should be available for all patients from the time of diagnosis with a life-threatening or debilitating condition. To ensure maximal benefit, these services should be integrated into all healthcare settings so that there is a continuum of care from diagnosis of a disease through the terminal phase.

However, there is no model that fits every organization or institution. Thus, palliative care delivery must be individually integrated into specific care settings (e.g., hospital, nursing home, assisted living, home care) with attention to the culture of the organization. Often, this requires training in the fundamentals of palliative care for all providers and establishing access to credentialed palliative care specialists and formal palliative care teams.

Efforts to introduce and sustain palliative care services must be tailored to the needs of the patient population, providers, institution, specific care setting, and local community. Palliative care services must organize and maintain an interdisciplinary team that can provide sufficient services including support for the patient and family, optimal use of institutional and community resources, and ensure close collaboration with other professionals involved with the care of the patient with continuity of care a priority. The palliative care of children differs from palliative care of adults. Therefore, pediatric services should be delivered by professionals with skill and training in the care of children across a range of care settings, developmental stages, and diagnostic categories. Support by academic pediatric settings is encouraged to meet the needs of practitioners in rural areas or for practitioners with little experience in the care of seriously ill children.

There are several clinical models that have demonstrated quality care for patients and families. They include a variety of disciplines that collaborate to provide quality care.

These include:

1. Hospice Care – a well-established program to provide patients with a prognosis of six months or less. As delineated within the Medicare Hospice Benefit, these services can be provided in the home, nursing home, residential facility, or on an inpatient unit.

2. Palliative Care Programs – institutional based programs in the hospital or nursing home to serve patients with life-threatening or life-limiting illnesses. Occur in hospital settings (academic, community, rehabilitation) and skilled nursing facilities. Provide services to patients anywhere along the disease continuum between initial diagnosis and death. Can include a consultation team, a fixed-bed unit, or a swing-bed unit.

3. Outpatient Palliative Care Programs – occur in ambulatory care settings to provide continuity of care for patients with serious or life-threatening illnesses.

4. Community Palliative Care Programs – occur in communities as consultative teams who collaborate with hospices or home health agencies to support seriously ill patients who have not yet accessed hospice.

The continued success of this project is evidenced by how the Clinical Practice Guidelines for Quality Palliative Care encourage new programs. Accomplished either as the expansion of existing palliative and hospice programs to allow greater access to care, The Clinical Practice Guidelines for Quality Palliative Care will: continue the development and evaluation of new and existing services, ensure consistent and high quality palliative care as measured by the National Quality Forum Preferred Practices, provide certification initiatives for specialty status in palliative care, and provide recognition of specialty status for certification initiatives in palliative care. Most importantly the Guidelines will serve as the basis for all _{palliative care settings.}

·                       History of hospice:  In the late 1960’s, modern programs to care for the dying were organized (St. Christopher’s in London was the most notable, founded by Dame Cicely Saunders).  The word “hospice,” borrowed from the Middle Ages, was used to designate way-stations for pilgrims on their way to the Holy Land.  Dame Saunders viewed life as a journey, and just as pilgrims needed a place of support to be able to finish a journey, so those near the end of life’s journey need support in order to complete their passage well.

 

·                       Because hospice takes care of the terminally ill, it quickly becomes associated with death.   In some cultures, coming under the care of a hospice program has been seen as a “death sentence,” leading many patients/families to resist admission to hospice.  For this reason some of those involved in end of life care began advocating for the use of another concept–palliative care.

·                       Palliative care can be defined as, “an approach that improves the quality of life of patients and their families, facing the problems associated with life-threatening illness, through the prevention and relief from suffering, by means of early identification, impeccable assessment, treatment of pain and other problems physical, psychosocial, and spiritual” (Sepulveda et al., 2002).  Palliative care can also be defined as “both a philosophy of care and an organized highly structural system for delivering care” (National Consensus Project [NCP], 2009).

 

·                       In addition, palliative care (National Consensus Project, 2009):

Ø     Has as its goal to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. 

Ø     Includes the goals of enhancing quality of life for patients and family members, helping with decision-making, and providing opportunities for personal growth.

Ø     Can be rendered along with life-prolonging treatment OR as the main focus of care.

Ø     Is medical care provided by an interdisciplinary team.

Ø     Identifies physical, psychological, spiritual, and practical burdens of illness.

Ø     Is integral to all health care delivery system settings (e.g. emergency department, nursing home, home care, assisted living facilities, outpatient and non-traditional settings).

 

·                       History of palliative care:  Palliative care today is no longer limited to end-of-life care, however palliative care began in the hospice movement.

 

·                       Hospice benefits vary across countries. What does hospice provide in your country?  Some agencies provide home palliative services, as well as home hospice, so that patients can more easily transition between the two services (Egan-City & Labyak, 2010).

·                       The word “palliative” comes from the latin word pallium (cloak/cover).  When a patient receives palliative care, the intent is to “cover-up” the pain and other debilitating symptoms so that they are reduced or completely “covered” and no longer visible.  Care is not provided, based on the amount of time a person has to live. Though aggressive symptom management is prescribed in palliative care, the goal is not specifically about cure, but rather improving the quality of life for both the patient and his/her family.  However, the patient may be actively receiving treatment for symptoms of the disease (e.g. surgery, radiation, etc) at the same time they are receiving palliative care.  Think of it this way……..a diabetic receives palliative insulin daily.  The insulin is not going to cure the diabetes, but will “cover-up” and control the effects of diabetes.  This allows the patient to live longer with fewer side effects and in turn, improves their quality of life. 

 

·                       Hospice and palliative care services both provide interdisciplinary care, treatment of the whole person and family (physical, psychological, spiritual, social), educates and supports patient and family, extends to all patients and families across diverse life-threatening illness, and provides bereavement services.  The goal is to improve the quality of a life for the patient and his/her family.

 

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·                       Today, terminally ill patients have a long trajectory of curative treatment(s), followed by palliative care (if all treatments are deemed to not be helpful) and then a short period of time with hospice.

 

Talking points/questions would include:

Q:  Would this patient benefit from palliative care? 

A:  Yes      

Q:  What services would this patient most likely need now?

A:  Pain and symptom control, support/enhancement in the best possible quality of life for him and his family, assistance with decision-making, assessment/management of physical, psychological, spiritual, and social needs, and care provided by an interdisciplinary team.

Q:  How would you describe the differences between this patient receiving “hospice care” vs. “palliative care?”

A:  Hospice care would be provided, knowing that the patient has six months or less to live.  The care may be provided in the patient’s home, in an in-patient hospice setting or in the rehab facility he is currently in.  Palliative care would begin, ideally, at the time of diagnosis, where emphasis would be placed on managing pain and symptoms and improving quality of life through the remainder of the patient’s life. 

Q:  How would you describe similarities between “hospice care” vs. “palliative care?”

A:  Both hospice care and palliative care would address not only the physical needs, but also the psychological, spiritual, and social needs.  Care would be interdisciplinary with both hospice and palliative care, and emphasis would be on the family as the unit of care.  Bereavement services would be offered through both hospice and palliative care programs.

·                       Quality-of-life (QOL) dimensions encompass the physical, psychological, social and spiritual dimensions of a person.  The dying experience impacts all dimensions (Ferrell, et al., 1991).

·                       The meaning of quality of life:

Ø     Differs from person to person.

Ø     Can only be defined by the patient based on their own life experience.

Ø     Important to examine aspects of each dimension from the patient’s and family’s perspective. 

Ø     Do not assume what “quality” means to them.

 

·                       Focus on both negative and positive attributes.  Only assessing and focusing on fears, for example, misses the opportunity to help patients and families realize their hopes.

 

·                       Quality of life is considered throughout the illness/dying trajectory (including the time of death and the bereavement period). 

 

·                       Quality of life at the end of life means addressing multiple dimensions of care.

 

·                       Address each of the four dimensions of care listed above, giving examples from your own practice.  Talk about a recent patient that many of the participants may have taken care of. Point out that people can experience major problems within each of these dimensions.  For example:

A 42-year-old woman was diagnosed 3 months ago with pancreatic cancer. 

Ø     She is unable to take care of her home, cook, and care for her 2 teen-agers due to chronic fatigue, pain, and nausea (physical).

Ø     She is anxious and fearful about her condition and distraught that she caot obtain pain relief (psychological).

Ø     She is sad that she is unable to participate in her children’s activities, and continue with her community responsibilities.  She has alopecia and has lost 20 pounds since becoming ill.  Her clothes no longer fit and she does not have the energy to shop for new ones.  “My husband says he is frustrated with me” (social). 

Ø     She feels hopeless because she knows she only has a few months to live.  She believes that her suffering is due to God punishing her for past sins.  She wants to make the last days/weeks/months of her life as positive as possible, but she caot find peace among all the pain and suffering (spiritual).

 

·                       The healthcare team has a unique opportunity to maintain patients’ and families’ hope by providing excellent physical, psychosocial, and spiritual palliative care (Ersek & Cotter, 2010).

 

·                       Experiential processes include:

Ø     Preventing and managing end-of-life symptoms.

Ø     Encouraging patients and families to transcend their current situation.

Ø     Encouraging reminiscing.

 

·                       Spiritual/transcendent processes include:

Ø     Facilitating participation in religious rituals/spiritual practices.

Ø     Making necessary referrals to clergy and other spiritual support people.

 

·                       Relational processes include:

Ø     Minimizing patient and family isolation.

Ø     Establishing and maintaining an open relationship.

Ø     Communicating one’s own sense of hopefulness.

 

·                       Rational thought processes include:

Ø     Assisting patient/family to establish, obtain, and revise goals without imposing one’s own agenda.

Ø     Assisting in identifying available and needed resources to meet goals.

Ø     Increasing patients’/families’ sense of control when possible.

 

·        A number of valid, reliable tools are available to assist the healthcare team in assessing various aspects of palliative care.  Measurement tools are utilized to develop changes and to identify interventions that can improve palliative care.

 

·        Examples of the tools that can be used:

Ø     Physical symptoms

Ø     Emotional symptoms

Ø     Spirituality

Ø     Functional status

Ø     Quality of life

Ø     Caregiver outcomes

 

·                       Information regarding access to instruments can be found at the following websites:

 

Ø     The Toolkit of Instruments to Measure End-of-Life Care (TIME) available online at www.chcr.brown.edu/pcoc/toolkit.htm (Accessed January 20, 2011).

Ø     City of Hope Pain and Palliative Care Resource Center: http://prc.coh.org

 

·        Survival predictors include:

Ø     Patient performance status (energy and activity levels); can be used to predict survival in cancer patients.

Ø     Instruments/tools (e.g. Karnofsky, ECOG) are poor measure for survival predictions in advanced disease (Lamont & Christakis, 2007).

Ø     Patient clinical signs and multiple symptoms (dyspnea, dysphagia, weight loss, xerostomia, anorexia, and cognitive impairment) are associated with limited survival time in cancer patients (Llobera et al., 2000; Vigano et al., 2000).

Ø     Biological markers (e.g. elevated platelet count, decrease in serum albumin, etc) can also be indicators of limited survival (Lamont & Christakis, 2007).

Ø     Clinician predictions:  While studies have indicated that clinicians tend to overestimate survival, a useful method is to ask yourself, “Would I be surprised if this patient were to die in the next six months or so?”  This helps the clinician determine when further discussions are needed, revisiting goals of care, and for whom appropriate palliative and end-of-life services including advance care planning, comfort care, and increasing psychological, social and spiritual support might be beneficial (Lynn et al., 2000).

 

·        The healthcare team plays an important role in improving palliative care.  Remember that some things cannot be “fixed” (Faas, 2004):

Ø      We cannot change the inevitability of death.

Ø      We cannot erase the anguish felt when someone we love dies.

Ø      We all must face the fact that we too will die.

Ø      No matter how hard we try, the perfect words or gestures to relieve patient and family distress rarely, if ever, exist—that is why presence is so important.

 

·        The use of “presence” as a way of expressing compassionate caring

Ø      Everyday, we are invited to be present at the last moments of a patient’s life; to care for him/her and the family at the time of death; to care for the bereaving family.

Ø      The healthcare team can use therapeutic presence as a means of communicating care for the patient struggling with emotional/spiritual elements of suffering associated with multiple losses.

Ø      “Presence may in fact be our greatest gift to these patients and their families” (Borneman & Brown-Saltzman, 2010).

 

·                       Maintaining a realistic perspective

Ø      There is no right way to die, no cookbook approach.

Ø      Crises and difficulties arise along with unexpected and profound joys.

Ø      A flexible approach is essential to meet the changing needs of the patient and family.

Ø      Recognition that quality of life (QOL) is determined by the unique needs of the patient and family assists the healthcare professional in remaining focused on goals of care.

 

·                       Note:  In order to continue this difficult work of “not being able to fix things,” we must grieve the loss of their patients and be grateful for the privilege to make this journey with them.  Hopefully, others will accompany us when our time comes—and indeed it will (Vachon & Huggard, 2010).

 

·                       The healthcare team can impact quality end-of-life closure by identifying persons with any life-threatening illness or condition.  This can take place in a variety of settings, such as:

Ø      Acute care,

Ø      Emergency departments,

Ø      Rehabilitation centers,

Ø      Long-term care/skilled nursing facilities,

Ø      Infusion clinics,

Ø      Home.

 

·        Early identification means that palliative care can be started sooner, allowing patients and families to set and achieve goals (Coyle, 2010). 

 

·        Expanding the concept of healing:

Ø      Ensuring quality end-of-life closure: At the end of life, nursing care shifts from a focus of wellness/recovery to an understanding of “healing” (Coyle, 2010).

 

·                       The role of the nurse in education:

·                        

Ø      Competencies – Through education, the nurse masters competencies in excellent palliative care.

                                                                                                                                       Quality palliative care encompasses physical, psychological, social, and spiritual aspects and includes the family as the unit of care.  These are not only defining features of the nursing role, but also support the philosophy and principles of palliative care as well as reflect the dimensions within the Quality-of-Life model.

 

·        Some final thoughts:

Ø      Since we cannot practice what they do not know, increased knowledge is essential to improved patient care via undergraduate/graduate nursing education and professional development.

Ø      Palliative care is not only “doing for”, but is also largely “being with” patients and families.

Ø      Palliative care is best provided by healthcare professionals functioning as part of an interdisciplinary team.

 

·        Some final questions:  What would you consider a good death? (let participants share their thoughts—below are some answers you may receive)

Ø      The patient was free from pain and other distressing symptoms.

Ø      Adequate time was spent addressing important patient/family concerns in order to achieve quality end-of-life closure.

Ø      All possible treatments aimed at curing the illness were exhausted.

Ø      The patient died at home with dignity and surrounded by family and friends.

Ø      The patient was able to live long enough to finish unfinished business.

Ø      The patient lived long enough to witness a particular event (e.g., a birth, graduation).

 

·                       Not all deaths are peaceful or “good”: It may be difficult to control symptoms, or to resolve all issues that the patient and/or family wants to address. Such deaths may be a cause of distress for the members of the healthcare team.

 

·                       Suffering is not a prerequisite to finding meaning in life, but it is possible to find meaning in spite of suffering.

 

·                       When faced with overwhelming losses of autonomy and independence, an individual retains the freedom to choose one’s outlook on life and search for meaning. In this way, dignity is preserved even though a person loses what society deems as useful (Chochinov, 2002; Frankl, 1984).

 

·                       The healthcare team individually, and collectively, play a vital role in improving care at the end of life.

        

·                       In 1959, Victor Frankl, a psychotherapist and concentration camp survivor wrote:

“We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed…When we are no longer able to change a situation, …we are challenged to change ourselves” (Frankl, 1984, pg. 135).

 

Why is Palliative Care Important?

 

Each year nearly 500,000 people die in the nursing home or shortly after being transferred to an acute care facility. Many people in nursing homes are elderly and have multiple chronic conditions that are not responsive to curative treatment. This module will focus on ways to improve the care of those at the end-of-life. Palliative care will be defined and we will review the three major domains of palliative care. We will discuss ways in which all disciplines can be involved in improving care for the dying.

Included in this module are two brief video segments. One video segment shows a team meeting where members of a nursing home staff discuss the palliative care needs of a resident. The other contains an interview with a family member that de- scribes ways in which staff can improve life for the resident and the family.

 

Definitions of palliative care.

One widely used definition is

“the study and management of persons with progressive, advanced disease for which the prognosis is limited and the focus is on quality of life.”

This definition highlights two important components of palliative care. These are:

1) the focus on care at end-of-life and

2) the emphasis on promoting quality of life rather than extending life at any cost.

 

Another common definition is one used by the World Health Organization which states that palliative care is “active, total care of persons whose disease is no longer responsive to curative treatment.” This definition highlights the importance of active care at the end-of- life. A common misperception is that palliative care merely emphasizes withdrawing treatments that extend life. While in some cases this may be an appropriate part of a palliative care plan, palliative care actually entails working aggressively to:

• manage symptoms,

• ascertain and honor individual and family wishes, and

_{• support the person and family through the dying process.}

 

What is hospice? Hospice is a benefit offered to all Medicare recipients. It may not be available for those who have selected an HMO rather than traditional Medicare. For an individual to qualify for the hospice benefit, a physician must certify that he/she is expected to live six or fewer months. It is often very difficult to predict time until death, especially in patients who suffer from a multiple chronic illnesses such as Alzheimer’s disease or chronic obstructive lung disease. While many elderly persons with end-stage disease would benefit from hospice services, most are not referred until the very end of life, often with only a few days or weeks of life remaining.

Additionally, those who agree to hospice care also must agree to forego aggressive treatment and hospitalization. There may be individuals who would benefit from intensive symptom management and want to continue to seek curative treatment until death; thus, they are unwilling to accept hospice care.

 

What is palliative care? Since palliative care can be offered by the  staff without any additional resources, it is available to all those under care regardless of their payment status and without the need for a six month prognosis. Additionally, palliative care can be offered to individuals regard- less of their wishes for having curative treatment as well. If a person is eligible for hospice and wishes to enroll, palliative care offered by facility staff will complement the hospice services.

Palliative care is often discussed as being made up of three domains.

• advance care planning or discussions of the person’s wishes concerning life-sustaining treatments

• physical and emotional comfort or aggressive management of symptoms, and

• psychosocial support or interventions designed to provide emotional and spiritual support to the person and the family.

These three areas all are important to maintaining quality of life and dignity for individuals and their families.

In the following overheads we describe each of these areas in more detail and suggest practical ways to integrate these principles into daily practice.

Advance care planning is far more than merely filling in the blanks of a standardized form. It is necessary to understand the person’s values and the laws of your state in order to assist individuals and their families with advance care planning,

Many different values influence the decisions people make about life-sustaining treatment at the end-of-life. These include an individual’s sense of what makes life worth living and the importance of quality of life. Individuals may have very particular concerns about the loss of control, desire to remain alert and fear about suffering unduly. These are shaped by their individual experiences, family wishes, and religious beliefs.

Each state has its own legal requirements for the execution of advance directives. In order for an advance directive to be legally valid, these requirements must be met. Questions about the law can usually be answered by the facility social worker or the local hospice agency.

A symptom is a person’s subjective experience of discomfort due to a disease or disorder. Especially common physical symptoms include:

 

It is important to assess for these symptoms frequently and thoroughly using the criteria mentioned earlier such as frequency, duration, etc. The physical symptoms that people may experience at end of life vary greatly depending on the individual’s disease.

 

A resident is the expert on his or her symptoms. If an individual complains of a symptom, then the person has the symptom. There is no way to verify pain through examination. A possible exception to this would be a person with dementia who complains of constipation despite normal bowel habits. While this person may not, in fact, be constipated, it is possible the person is experiencing abdominal discomfort or bloating that is being inter- preted as “constipation.”

As with emotional symptoms, complete assessment is the key to properly communicating with providers and developing an effective treatment plan aimed at maximizing the individual’s comfort.

When individuals experience emotional symptoms, they may be unable or unwilling to bring them to the staff’s attention. This makes

it imperative that the staff be alert to troubling symptoms and frequently assess them for the presence of symptoms.

 

Emotional symptoms often experienced at the end of life include depression, anxiety, agitation, and irritability. There are, of course, many other possible symptoms and it is important to be alert to any changes in mood or behavior.

 

When a symptom is present, it should be thoroughly evaluated. The evaluations should include:

a. onset (when it started),

b. frequency (how often it occurs),

c. quality (what the experience is like),

d. duration (how long it lasts),

e. aggravating and alleviating factors (what makes it better or worse), and

f. intensity (how uncomfortable it is).

While individuals may not be able to describe all these aspects, it is helpful to get as much information as possible. Also, note changes in behavior such as increasing agitation or reclusiveness. Communicating this information to the care providers is essential for effective plans to reduce symptoms and mini- mize the distress these symptoms can cause individuals and families.