Hospice Palliative Care:A Model for Quality End-of-Life CareJORDAN H. LLEGO, R.N., R.P.T., M.S.N., Ph.D(INP)

Hospice is a program of care provided across a variety of settings,based on the understanding that dying is part of the normal life cycle.

As people experience this last phase of life, hospice provides comprehensive palliative medical and sup- portive services, compassion, and care with the goals of com- fort and quality of life closure.A hospice supports the patient through the dying process and the family through the experi- ence of caregiving, the patients illness, dying, and their own bereavement.

Compassionate care by its very nature is shaped to t the individual needs and values of the people involved

intro: Instead of asking the patient and family members to t into a caregiving system,hospice extends services according to their unique situation and values focusing on compassionate care.

Hospice allows the patient and family to direct the services received, rather than having professionals direct the lives of the patient and family. Hospice focuses on the individuals and familys world and encourages personal choices and meaningful experiences concerning the process of illness,dying,and death.

Hospices unique blend of compassion and skill helps patients and their families deal with life-limiting illnesses and caregiving so that they may: live each day with comfort and dignity, retain control over their lives, discover renewed meaning and purpose in this time of their lives.

Hospice Palliative Care:A Holistic Approach Focusing on the Experience of the Patient and FamilyThe experience of the last phase of life is an individual journey involving ones mind,body,and spirit.

Casselldescribed a theory of personhood whereby each person is a holistic being with dynamic,interrelated dimensions that are affected by the changes and adaptations experienced with progressive illness and dying.These dimensions involve the physical experience of end-stage disease, the emotional experience of ones rela- tionships, and the way in which one denes spiritual exis- tence.

As the disease progresses and the physical dimensions decline, the other dimensions (i.e., interpersonal and spiri- tual) take on added meaning and purpose. What one denes as quality of life changes substantially for people with life- limiting illnesses.Life perspectives,goals,and needs change.It is a time of reection on a broader sense of meaning,purpose, and relationships,based on each individuals values.

Hospice Grew from this understanding of full personhood; it is designed to offer expert end-of-life care to patients and families that addresses all of these dimensions through an IDT approach.

Each patient and family is supported by an IDT consisting of physicians, nurses, social workers, counselors, chaplains,therapists,home health aides,and volunteers.These disciplines reect the expertise needed to address the varied dimensions that are affected through the course of illness, caregiving,dying,and bereavement.

Hospice Palliative Care Philosophysupports the long-term objective of creating a personalized experience with each patient and family at the end of life,whereby in the face of suffering there is opportunity to nd meaning, growth, and quality end of life and relationship closure.Promoting quality of life and relationships as well as death with dignity,

hospice assists the patient and family to live each day as fully as possible for the remain- ing time together.

Honoring the Patients and Familys ExperienceThe experiences of advanced illness, dying, and caregiving have signicant and profound effects on both the patient and the family.Therefore,hospice philosophy supports both patient and family as the unit of care.

Family not only the biological relatives but also those people who are identied by the patient as signicant.

Patients and families face many changes and losses during the last years of life.Patients often become concerned about the burden they may cause their family and how their family will survive after they are gone. Families become concerned about how to care for the patient,how to adapt to role changes,their reactions to their losses, and how their lives will change after the death. Families provide varying degrees and types of sup- port, love, and compassion during times of change and crisis. As the patient becomes more dependent on others for care, families become even more signicant in this process.Yet,many families have never experienced caring for a loved one who is dying,and many lack the experience of their own losses.

With understanding of the importance of these relation- ships and family dynamics,patient and family suffering can be minimized and experiences can be enhanced through educa- tion, support, and services.

Hospice honors the intimate and important role of the family in caregiving and offers resources, education,and support so that family members can be involved in a meaningful way with the care of their loved one.

Care Is Directed by Patient and Family Choices and Values Nurses are challenged to approach the hospice care process differently from other situations.Hospice care begins and continues with ongoing facilitated discussions with the patient and family, to discern what is most important to themtheir values, choices, wishes, and needs for the remaining life and death.

This information becomes the foundation that directs the team in the provision of care and services.

Goals become patient- and family directed rather than nurse directed.

The care plan becomes the patient/family care plan,

It is not about what nurses feel is best but about what the patient and family choose and decide.

the care process is dened by what the patient and family decide is important for this time.A care process directed by patient and family values begins to differentiate the specialty of hospice nursing,with an overall goal of quality of life and relationship closure as dened by the patient and family. This goal is achieved when the patient and family are given opportunities to identify what is most important to completion of their life and relationships, nding meaning in closure, and reaching personal goals before and after the death.

Hospice Care,Palliative Care,and Curative Care

Hospiceintegrated model of palliative care,which can be as aggressive as curative care, with a focus on comfort, dignity, quality of life/relationship closure, and patient/family choice.

Palliative care extends the principles of hospice care to a broader population that could benet from receiving this type of care earlier in their illness or disease process.

Palliative care extends the principles of hospice care to a broader population that could benet from receiving this type of care earlier in their illness or disease process.Palliative care, ideally, would segue into hospice care as the illness pro- gresses.

.An aggressive curative approach to care may actually cause more suffering if cure is no longer possible, or it may simply extend the period of suffering needlessly.As a patient advocate, the hospice nurse is responsible for understanding the differ- ences between curative and palliative interventions, to avoid futile care and prevent unnecessary suffering.

Inherent problem orientation of curative care modelPractitioners are often trained to assess and identify problems and then determine how to reverse the problem and its effects

Palliative care moves beyond problem identication. The specialty of hospice nursing involves the expert management of end-stage disease symptomatology as a prerequisite to providing the opportunity for patients and families to experience life and relationship closure in ways that are personally meaningful. Hospice expands the traditional disease- and problem-orientated model to a proactive, preventive, quality of life/relationship closure orientation that reects the full scope of the patients and familys illness,dying, and caregiving experiences.

Through anticipation and prevention of the negative effects of physical symptoms, suffering can be decreased; this allows the patient and family the time and personal resource energy to attend to what is most important for their life and relation- ship closure. Moving beyond a simple problem orientation, the focus has become one of prevention of suffering and opportunity for growth rather than simply the physical reac- tion to disease.

A search for meaning and purpose in life is a common experience for people in their last years of life and for their families.

From the individual experience of suffering, death can be a time for personal growth,deepening or reconnecting interpersonal and spiritual relationships, and preparing for death and afterlife with enrichment of meaning.

Autonomy and ChoiceHospice philosophy promotes patient and family autonomy in which illness,caregiving,and dying are in accordance with the patients and familys desires.

Hospice philosophy strongly believes in patient choice regarding all aspects of living, care- giving,dying,and grieving,including where they will die,how they will die, and with whom they will die. Respecting the patients and familys choices is paramount to quality hospice palliative care.

One of the dying patients and familys greatest concerns is the fear of loss of control.

Anticipated losses and experienced by terminally ill patients and their families:loss of bodily functionsloss of independence and self-careloss of income with resulting nancial burdensloss of the ability to provide for loved onesloss or lack of time to complete tasks and mend relationshipsloss of decision- making capacity

Informed Decisions and AutonomyHospice philosophy has been built on the ethical principle of veracity.

truth-telling.Patients wishes for information about their condition are respected.Patients and families have the right to be informed about their condition, treatment options, and outcomes so that they can make autonomous, informed choices and spend the rest of their life the way they choose.

Truth-telling is the essence of open, trusting relationships. A sense of knowing often relieves the burden of the unknown. Knowing and talking about diagnosis and prognosis aids in making informed decisions. Patients who have not been told about their illness naturally suspect that something is wrong or being hidden from them, which can result in frustrating, unanswered questions. When patients and families are not told the truth or information is withheld, they can no longer make informed choices about the end of life.

Autonomy results in empowerment of the patient and family to make their own informed decisions regarding life and death.

Hospice encourages the discussion of advance direc- tives but does not inuence those decisions. Hospice nurses educate on these issues and offer support while the patient and family discuss and choose what is best for them. Their choices may change over time, as the disease progresses, the patient becomes more dependent, or they accomplish their life and relationship closure goals.

Advance Directives living willshealth care surrogacydurable power of attorneydo-not-resuscitate orders

the patients wishes are carried out even if he or she is no longer able to communicate or to make health care decisions.With advance preparation, these directives can act in place of the patients verbal requests to ensure that her or his wishes are honored.When patient and family members dis- cuss advance directives together,there is often less conict over decisions and family members are more comfortable support- ing the patients choices. When advance directives are com- bined with hospice philosophy, they can serve as preventive measures to ensure that patients choices will be communi- cated,supported,and carried out,avoiding ethical dilemmas.It is critical to provide continued opportunities for choice,input, informed decision-making, and ability to change decisions as situations change.Hospice team members are trained to facili- tate personal and family decision-making regarding care, ser- vice, and life closure issues. Often, simply having professionals comfortable enough to approach these issues allows patients and families to express their inner feelings,desires,and wishes.

Hospice care supports sensitivity in truth-telling to the degree that the patient and family choose, encouraging open commu- nication among the patient, the family, physicians, and the hospice team.

Preparation for death becomes difcult if com- munication is not open and truthful. With a truthful under- standing and freedom of informed choice, patients are more able to control their own living and dying instead of being con- trolled by the disease or by the treatment plans of others. They can put their affairs in order, say their good-byes, and prepare spiritually in a way that promotes quality and dignity.

Dignity and Respect for Patients and FamiliesQuality end-of-life care is most effective from the patient and family perspective when the patients lifestyle choices are maintained and his or her philosophy of life is respected

Individual patients and familys needs vary depending on values, cultural orientation,personal characteristics,and environment.

Dignityis provided when individual lifestyles are supported and respected.

This requires respect for ethnicity, cultural orientation,social and sexual preferences,and varied family structures. Hospice nursing requires the provision of nonjudgmental, unconditional, positive regard when caring for patients and families,treating each persons experience as unique.

Each person and family has individual coping skills,varied dynamics,and strengths and weaknesses.It is our responsibility to accept patients and families where they are,approaching living and dying in their own way.

Patients and families should be encouraged to express any emotion,including anger, denial, or depression. By listening without being judgmental, the hospice nurse accepts the patients and familys coping mechanisms as real and effective.

Dying patients have their own needs and wants, and hospice nurses must be open to accept direction from the patient.

A patients focus may include saving all of ones energy for vis- its from loved ones, loving and being loved, sharing with oth- ers ones own philosophy of life and death,reviewing ones life and family history, and sharing thoughts and prayers with ones family or caregivers. Patients goals may include such things as looking physically attractive or intrinsically explor- ing the purpose and meaning of their lives. Hospice workers openness and being prepared to accept and support the patients and familys direction on any given visit helps facili- tate and respect their goals. The patients and familys own frame of reference for values, preferences, and outlook on life and death is considered and respected without judgment.

Respecting patients requires hospice nurses to communicate a sense of what is important to the patient and family by ensuring that they express their values and opinions, participate in care planning, make decisions regarding care and how they choose to spend their time, and participate in their own care.

Fostering an environment that allows the patient and family to retain a sense of respect, control, and dignity is the foundation of hospice care and services.

THANK YOUAND BEREADY FOR A QUIZ

As people experience this last phase of life, hospice provides comprehensive palliative medical and sup- portive services, compassion, and care with the goals of com- fort and quality of life closure.A hospice supports the patient through the dying process and the family through the experi- ence of caregiving, the patients illness, dying, and their own bereavement.intro: Instead of asking the patient and family members to t into a caregiving system,hospice extends services according to their unique situation and values focusing on compassionate care.

Hospice allows the patient and family to direct the services received, rather than having professionals direct the lives of the patient and family. Hospice focuses on the individuals and familys world and encourages personal choices and meaningful experiences concerning the process of illness,dying,and death.As the disease progresses and the physical dimensions decline, the other dimensions (i.e., interpersonal and spiri- tual) take on added meaning and purpose. What one denes as quality of life changes substantially for people with life- limiting illnesses.Life perspectives,goals,and needs change.It is a time of reection on a broader sense of meaning,purpose, and relationships,based on each individuals values. Each patient and family is supported by an IDT consisting of physicians, nurses, social workers, counselors, chaplains,therapists,home health aides,and volunteers.These disciplines reect the expertise needed to address the varied dimensions that are affected through the course of illness, caregiving,dying,and bereavement.hospice assists the patient and family to live each day as fully as possible for the remain- ing time together.Patients and families face many changes and losses during the last years of life.Patients often become concerned about the burden they may cause their family and how their family will survive after they are gone. Families become concerned about how to care for the patient,how to adapt to role changes,their reactions to their losses, and how their lives will change after the death. Families provide varying degrees and types of sup- port, love, and compassion during times of change and crisis. As the patient becomes more dependent on others for care, families become even more signicant in this process.Yet,many families have never experienced caring for a loved one who is dying,and many lack the experience of their own losses.

With understanding of the importance of these relation- ships and family dynamics,patient and family suffering can be minimized and experiences can be enhanced through educa- tion, support, and services. This information becomes the foundation that directs the team in the provision of care and services.It is not about what nurses feel is best but about what the patient and family choose and decide.

the care process is dened by what the patient and family decide is important for this time.A care process directed by patient and family values begins to differentiate the specialty of hospice nursing,with an overall goal of quality of life and relationship closure as dened by the patient and family. This goal is achieved when the patient and family are given opportunities to identify what is most important to completion of their life and relationships, nding meaning in closure, and reaching personal goals before and after the death.Palliative care extends the principles of hospice care to a broader population that could benet from receiving this type of care earlier in their illness or disease process.Palliative care, ideally, would segue into hospice care as the illness pro- gresses.

.An aggressive curative approach to care may actually cause more suffering if cure is no longer possible, or it may simply extend the period of suffering needlessly.As a patient advocate, the hospice nurse is responsible for understanding the differ- ences between curative and palliative interventions, to avoid futile care and prevent unnecessary suffering.Palliative care moves beyond problem identication. The specialty of hospice nursing involves the expert management of end-stage disease symptomatology as a prerequisite to providing the opportunity for patients and families to experience life and relationship closure in ways that are personally meaningful. Hospice expands the traditional disease- and problem-orientated model to a proactive, preventive, quality of life/relationship closure orientation that reects the full scope of the patients and familys illness,dying, and caregiving experiences.

Through anticipation and prevention of the negative effects of physical symptoms, suffering can be decreased; this allows the patient and family the time and personal resource energy to attend to what is most important for their life and relation- ship closure. Moving beyond a simple problem orientation, the focus has become one of prevention of suffering and opportunity for growth rather than simply the physical reac- tion to disease. From the individual experience of suffering, death can be a time for personal growth,deepening or reconnecting interpersonal and spiritual relationships, and preparing for death and afterlife with enrichment of meaning.Hospice philosophy strongly believes in patient choice regarding all aspects of living, care- giving,dying,and grieving,including where they will die,how they will die, and with whom they will die. Respecting the patients and familys choices is paramount to quality hospice palliative care. truth-telling.Patients wishes for information about their condition are respected.Patients and families have the right to be informed about their condition, treatment options, and outcomes so that they can make autonomous, informed choices and spend the rest of their life the way they choose.

Truth-telling is the essence of open, trusting relationships. A sense of knowing often relieves the burden of the unknown. Knowing and talking about diagnosis and prognosis aids in making informed decisions. Patients who have not been told about their illness naturally suspect that something is wrong or being hidden from them, which can result in frustrating, unanswered questions. When patients and families are not told the truth or information is withheld, they can no longer make informed choices about the end of life. Hospice encourages the discussion of advance direc- tives but does not inuence those decisions. Hospice nurses educate on these issues and offer support while the patient and family discuss and choose what is best for them. Their choices may change over time, as the disease progresses, the patient becomes more dependent, or they accomplish their life and relationship closure goals.the patients wishes are carried out even if he or she is no longer able to communicate or to make health care decisions.With advance preparation, these directives can act in place of the patients verbal requests to ensure that her or his wishes are honored.When patient and family members dis- cuss advance directives together,there is often less conict over decisions and family members are more comfortable support- ing the patients choices. When advance directives are com- bined with hospice philosophy, they can serve as preventive measures to ensure that patients choices will be communi- cated,supported,and carried out,avoiding ethical dilemmas.It is critical to provide continued opportunities for choice,input, informed decision-making, and ability to change decisions as situations change.Hospice team members are trained to facili- tate personal and family decision-making regarding care, ser- vice, and life closure issues. Often, simply having professionals comfortable enough to approach these issues allows patients and families to express their inner feelings,desires,and wishes. Preparation for death becomes difcult if com- munication is not open and truthful. With a truthful under- standing and freedom of informed choice, patients are more able to control their own living and dying instead of being con- trolled by the disease or by the treatment plans of others. They can put their affairs in order, say their good-byes, and prepare spiritually in a way that promotes quality and dignity.Individual patients and familys needs vary depending on values, cultural orientation,personal characteristics,and environment.This requires respect for ethnicity, cultural orientation,social and sexual preferences,and varied family structures. Hospice nursing requires the provision of nonjudgmental, unconditional, positive regard when caring for patients and families,treating each persons experience as unique.Patients and families should be encouraged to express any emotion,including anger, denial, or depression. By listening without being judgmental, the hospice nurse accepts the patients and familys coping mechanisms as real and effective.A patients focus may include saving all of ones energy for vis- its from loved ones, loving and being loved, sharing with oth- ers ones own philosophy of life and death,reviewing ones life and family history, and sharing thoughts and prayers with ones family or caregivers. Patients goals may include such things as looking physically attractive or intrinsically explor- ing the purpose and meaning of their lives. Hospice workers openness and being prepared to accept and support the patients and familys direction on any given visit helps facili- tate and respect their goals. The patients and familys own frame of reference for values, preferences, and outlook on life and death is considered and respected without judgment. Fostering an environment that allows the patient and family to retain a sense of respect, control, and dignity is the foundation of hospice care and services.