✅ HOSPICE PALLIATIVE CARE

HOSPICE CONCEPT

Introduction

Definition of Hospice

• Hospice is a concept of care that provides support for the terminally- ill patient and the family allowing the patient to live as fully as possible until death.
• It is centrally administered program of palliative and supportive services which provides physical, psychological, social and spiritual care for dying persons and their families.
• Services are provided by a medically supervised inter- disciplinary team of professionals and volunteers.
• Hospice is a special kind of care designed to provide sensitivity and support for people in the final phase of a terminal illness.
• Hospice care seeks to enable patients to carry on an alert, pain- free life and to manage other symptoms so that their last days may be spent with dignity and quality at home or in a home- like setting.
• Hospice is a concept of caring derived from medieval times symbolizing a place where travellers, pilgrims and the sick, wounded or dying could find rest and comfort.
• The contemporary hospice offers a comprehensive program of care to patients and families facing a life threatening illness.
• Hospice is primarily a concept of care, not a place of care.
• It emphasizes palliative rather than curative treatment, quality rather than quantity of life.
• The dying are comforted. Professional medical care is given, and sophisticated symptom relief provided.
• The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s
• Trained volunteers can offer respite care for family members as well as meaningful support to the patient.
• Hospice is a concept of care designed to provide comfort and support to patients and their families when a life- limiting illness no longer responds to cure- oriented care.
• Hospice care contrasts with curative care because it is not designed to cure illness or lengthen life but emphasizes the management of all symptoms of a disease, with a special emphasis on controlling a patient’s pain and discomfort.
• Hospice deals with the emotional, social, and spiritual impact of the disease on the patient and the patient’s family and friends.
• Hospice care is defined as an interdisciplinary approach to provide medical and nursing care, pain management, and emotional and spiritual support directed at fulfilling patient’s needs and wishes at EOL (end of life)(National Hospice and Palliative Care Organization, 2008).
• Hospice care is one option for people with life limiting cancer when curative therapy or control of the disease is no longer realistic.
• Hospice programs provide holistic care at EOL. With an emphasis on meeting the patient’s goals of comfort and quality of life.
• The hospice model of care uses an interdisciplinary approach to provide nursing, medical, social, spiritual, nutrition, volunteer, and bereavement services. (Carlson, Morrison, Holford, and Bradley, 2007).

Who is the terminally- ill patient?

• The terminally- ill patient is one in whom, following accurate diagnosis, the advent of death is certain and not too far distant and for whom treatment has changed from the curative to the palliative and supportive.

                                                                                              

Dame Cicely Saunders

Background of the Hospice Movement

• It originally started as “ home for the dying” in the community by well innovative carers.
• From the 4th to the 16th century, these homes were called “Hospis” where the sick were looked after in religious hospices.
• In 1538, with the reign of Henry VIII, these homes were ordered closed.
• In the 19th century, the sisters of Dublin reopened and the name hospice was adopted as homes for the dying patients ran by the Catholics, the Jewish and the
• Dame Cicely Saunders started Christopher’s Hospice in London in 1967 and since then the hospice movement has extended from the hospice to hospital wards and the homes, embracing all kinds of needs and care: emotional, spiritual, physical and the cultural.
• By covering these needs, open communication flows between families, carers and the dying. This removes the fear of death- makes dying time- time of spiritual renewal and reunion with loved ones.

The Principles of a Hospice Program of Care

1. Dying is a normal process.
2. When cure is not possible, care is still needed.
3. Pain and other symptoms of incurable disease can be controlled.
4. Not all persons need or desire palliative care.
5. The amount and type of care provided should be related to client and family needs.
6. When a patient and family are faced with terminal disease, stress and concerns may arise in many aspects of their lives.
7. Personal, philosophic, moral or religious belief systems are important to patients and families who are facing death.
8. Continuity of care (services and personnel) reduces the patient’s and the family’s sense of alienation and fragmentation.
9. Families experiences significant stress during the terminal illness of one of their members.
10. Family participation in care giving is an important part of palliative care.
11. Not all patients have a family member available to take on the responsibility of giving care.
12. Family needs continue after the death of one of their members.
13. Patient and family needs may arise at any time.
14. No one individual or profession can meet all the needs of terminally- ill patients and families all the time.
15. Persons giving care to others need to be supported and replenished in order to continue to give care.
16. The need for quality assurance in health care requires the establishment of standards for practice and program operation.
17. Optional utilization of services and resources is an important goal in the administration and coordination of patient care.
18. Attention to physical comfort is central to palliative care.
19. Medical Care is a necessary element of palliative care.
20. The physical environment and setting can influence a patient’s response to care.
21. There is a continual need to improve the techniques of palliative care and to disseminate such information.
22. Documentation of services is necessary and desirable in the delivery of quality care.

Principles Underlying Hospice according to Saunders, who founded the world-renowned St. Christopher’s Hospice in London:

1. Death must be accepted.
2. The patient’s total care is best managed by an interdisciplinary team whose members communicate regularly with each other.
3. Pain and other symptoms of terminal illness must be managed.
4. The patient and family should be viewed as a single unit of care.
5. Home care of the dying is necessary.
6. Bereavement care must be provided to family members.
7. Research and Education should be ongoing.

How Hospice Differs from Other Types of Healthcare

1. Hospice offers palliative rather than curative treatment.

• • Under the direction of a physician, hospice uses sophisticated methods of pain and symptom control that enable the patient to live as fully and comfortably as possible.

2. Hospice treats the person, not the disease.

• • The interdisciplinary hospice team is made up of professionals who can address the medical, emotional, psychological, and spiritual needs of the patients and their loved ones.             

3. Hospice emphasizes quality, rather than length of life.

• • Hospice neither hastens nor postpones death: it affirms life and regards dying as a normal process. The hospice movement stresses human values that go beyond the physical needs of the patient.

4. Hospice considers the entire family, not just the patient, the “unit of care.”

• Patients and their families are included in the decision- making process, and bereavement counselling is provided after the death of their loved one.

5. Hospice offers help and support to the patient and family on a 24- hours a day, seven- days – a week basis.

• • For hospice patients and their loved ones help is just a phone call away. Patients routinely receive periodic in-home services of a nurse, home health aide, social worker, volunteer, and other members of the hospice interdisciplinary team.

1. Is Caring for the patient at home the only place hospice care can be delivered?

• • Although 90% of hospice patient time is spent in a personal residence, some patients live in nursing homes or hospice centers.

Home Hospice- hospice care provided while a patient continues to live at home or the place they called home at the time of enrolment. The family or significant others are generally able to handle the needs and care of the patient, with assistance from the hospice team, including a hospice nurse.

Inpatient Hospice- hospice care provided 24 hours per day in a facility (hospital, hospice residence, or nursing home) for symptoms or crises that cannot be managed in the patient’s home.

Interdisciplinary collaboration- is distinguished from multidisciplinary practice in that the former is based on communication and cooperation among the various disciplines, each member of the team contributing to a single integrated care plan that addresses the needs of the patient and family.

Multidisciplinary care- refers to participation of clinicians with varied backgrounds and skill sets but without coordination and integration.

Palliative Care

•  is an approach to care for the seriously ill that has long been a part of cancer care.
• Increasingly, palliative care is being offered to patients with non-cancer chronic illnesses, where comprehensive symptom management and psychosocial and spiritual support can enhance the patient’s and family’s quality of life.
• A comprehensive, person- and family- centered care when disease is not responsive to treatment.
• The active, total care of patients whose disease is not responsive to treatment (WHO,1990).
• Not care that begins when cure- focused treatment ends.
• The goal is to improve the patient’s and family’s quality of life, and many aspects of this type of comprehensive, comfort- focused approach to care are applicable earlier in the process of life- threatening disease.
• It emphasizes management of psychological, social, and spiritual problems in addition to control of pain and other physical symptoms.
• Palliative care is sometimes called hospice care.

PALLIATIVE CARE VS. HOSPICE CARE

•  Palliative care is closely associated with hospice care, this type of care is not just for the dying.
• Palliative care is sometimes confused with hospice care since one of the main goals of hospice care is comfort and most hospice patients are dying.

DIFFERENCES BETWEEN PALLIATIVE AND HOSPICE CARE

 PALLIATIVE CARE

•  Focus is on pain and symptom management
• Patient does not have to be terminal
• May still be seeking aggressive treatment

HOSPICE

•  Focus is on pain and symptoms management
• Patient has a terminal diagnosis with life expectancy of less than six (6) months
• Not seeking curative treatment
• In both hospice and palliative care, the focus is on quality of life of the patient.
• The goal for both types of care is to address any adjustment to illness or end of life issues.
• In Canada, the clarity concerning these differences was also taking shape.

Is Palliative Care the same as Hospice Care?

YES, the principles are the same.

• Hospice means different things in different countries- it is variously used to refer to a philosophy of care, to the buildings where it is practiced, to care offered by unpaid volunteers, or to care in the final days of life.
• It is better to adopt and use the term palliative care.

(The IAHPC Manual of Palliative Care, 2^nd Edition)

• It is recorded that “ due to the fluidity of the English language, “hospice care” and palliative care” are no longer recognized as separate entities. Hospice Palliative Care is now widely accepted in Canada.
• The Canadian Hospice Palliative Care Association (CHPCA) defines hospice palliative care in terms of its aim to relieve suffering and improve the quality of living and dying.
• Care is positioned as that which occurs at the time of life- threatening diagnosis is identified and becomes progressively the focus of concern as curative treatments prove ineffective.

What Unites Hospice and Palliative Care

 CHPCA Core Values

1.  Patient centered
2. Family oriented
3. Holistic
4. Active
5. Universally accessible
6. Complementing disease modifying therapy
7. Delivered by an educated and regulated interprofessional team

ESSENTIAL COMPONENTS OF PALLIATIVE CARE:

1. Symptom Control
2. Effective Communication
3. Rehabilitation
4. Continuity of Care
5. Terminal Care
6. Support in Bereavement
7. Education
8. Research

1. SYMPTOM CONTROL

•  Symptom management is a fundamental aspect of palliative care (WHO, 2003).
• It is the primary therapeutic goal of service delivery and is aimed at subjective well- being (de Conno and Martini 2001).
• It is estimated that 90% of patients who access palliative care services have a diagnosis of cancer ( Bruera & Portenoy, 2001), governments worldwide are now committed to ensuring that palliative care is available to all who need it, including patients diagnosed with incurable non-malignant diseases (Armstrong,2001, Scottish Executive, 2001, WHO, 2003).

Key Principles of Symptom Management

1.  In implementing any intervention or treatment related to the management of symptoms, the preferred choice of the patient should be at the forefront of the minds of practitioners. This includes agreeing to non- treatment as an option.
2. Open communication involving not only patients and family members but also all relevant health professionals will facilitate informed decision- making.
3. Listening to the patient’s own story, including past and present life experiences, will assist the professional to understand the impact of symptoms from the patient’s perspective.

• Symptoms are multidimensional in nature and therefore symptom management is best achieved by adopting a multi-professional approach.

THE PROCESS OF SYMPTOM MANAGEMENT

 Five main Principles (EEMMA)

1. Evaluation
2. Explanation
3. Management
4. Monitoring
5. Attention to Detail

Evaluation

• Self- reporting instruments are most accurate

Explanation

• Explanation about care and treatment options is vital to the delivery of effective care and empowers patients and carers to be involved as equal partners in the decision- making process.

 Management

• Management builds on the assessment process.
• The first stage is to identify the cause and determine what is reversible and treatable.
• Health professionals should work in partnership with the patient.
• The patient’s priorities must be considered and realistic goals set in conjunction with the patient and then documented in the management plan.

Monitoring

• Will not only determine the efficacy of interventions but also facilitate regular reassessment of the severity of the symptom and impact on the patient.

Attention to Detail

• throughout the process of symptom management, the missing of details by health professionals can have dire consequences.

1. EFFECTIVE COMMUNICATION

 COMMUNICATION

 Key aspect of the role of the nurse.

• Buckman (1993) proposed that effective symptom control is impossible without effective communication.

Problems that professionals have with Communication:

1.  Distancing or blocking tactics.
2. Ignoring cues
3. False Reassurance
4. Avoidance tactics

• In order to communicate effectively with patients and their families, nurses must be supported in the workplace.
• This can be achieved through clinical supervision (Heaven, (2001).

1. Most authors agree that effective communication in palliative care incorporates effective listening skills and appropriate non- verbal communication; counselling skills, such as reflection, clarification and empathy; supportiveness; and, above all, self- awareness.
2. Faulkner & Maguire (1994) note that, in order to communicate effectively with patients, nurses need to pay attention to assessment skills, the handling of difficult questions or conflict, dealing with anger and denial, and providing support and supervision.
3.  Communicating effectively involves providing patients and their families with information:

1. 1. Able to make decisions about care
   2. Initiate discussions about end- of- life care when the patient can actively participate
   3. Facilitating discussions with patients and their families in a supportive and compassionate manner.

1. SUPPORT IN BEREAVEMENT

• •  Supporting those who face loss or have experienced loss presents one of the challenging dimensions of palliative care.

Bereavement

• The time of mourning after a loss.

Hospice Care

• Usually begins when the patient has six (6) months or less to live and ends with the family one (1) year after death.

BEREAVEMENT CARE

•  Continuation of care for the family after the death.
• The hospice care team works with surviving loved ones to help them through the grieving process.
• A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/ or letter contact, as well as through support groups.
• The hospice team can refer family members and care- giving friends to other medical or professional care if needed.
• Bereavement services are often provided for about a year after the patient’s death.

BEREAVEMENT CARE according to Anstey and Lewis (2001):

1.  Care of the family.
2. Information giving and receiving
3. Care of the deceased.
4. Supporting ritual and mourning customs.
5. Legal and medical interventions.
6. Future care and support.

GOOD PRACTICE IN SUPPORTING THE BEREAVED:

1.  Looking after yourself as you look after the needs of the bereaved.
2. High- quality pain and symptom control in the run- up to the patient’s death.
3. Assessing risk and identifying current and future social support network.
4. Referring on to other members of the multi-professional team for more specialist support.
5. Good quality information and communication at all points in the bereavement journey.

SOME SUGGESTIONS TO HELP SUPPORT THE BEREAVED

1. Listen and accept the person in a non- judgmental way.

• Allow people to grieve in a way that suits them.
• There is no right or wrong to grieve.
• Part of this involves giving the person permission to express the unhappiness they are feeling at that moment in time.

2. Demonstrate empathy with the person’s position and challenges.

• Use good listening skills.

3. Tolerate and stay with silences.

• Silence is often a productive time during which the bereaved may experience new insights about themselves and the situation they now find themselves in.

4. Stay in touch with your own feelings about death and dying.

     In order that the bereaved can make sense of what they are experiencing:

5. You need to maintain an awareness of your own reactions to death, personal experiences, and vulnerabilities.
6. stay focused on addressing their experience, needs, and challenges.
7. If the situation has made you feel angry, helpless or sad it is worth checking out with the individual how they feel. To ensure that you are working with their feelings and not yours.
8. Offer assurances based on the person’s actions in the run- up to the death.

-“YOU DID EVERYTHING YOU COULD”

6. Encourage the person to be patient with themselves, especially in the months ahead, when they will be confronted with the gaps left by their loved ones.

7. Don’t take anger personally.

• This and other emotions are likely to be part of the grief process.
• It is important to keep calm and to try and understand the cause, always ensuring that you are safe in the situation.
• If there is escalation then you should remove yourself and seek help

8. Consider diversity/ cultural differences.

• Different cultures, religions and ethnic groups may have different views, values, rites and rituals around the dying process and death.
• As a nurse it is imperative that you find out what these are to ensure the appropriate care.
• It also help you to understand the patient’s and family’s reactions to their situation.
• You may need to seek an interpreter to aid with communication but you must ensure that (except emergency) the interpreter is not a family member but properly qualified, external interpreter who is acceptable to the patient.

9. Allow for Coping Strategies.

• Vary from day to day and depend on what the person is facing, their personality, belief system, cultural background, age, life experience and loss history.
• REHABILITATION
• CONTINUITY OF CARE
• TERMINAL CARE

EDUCATION

•  As healthcare is constantly developing and changing, so education plays an important role in keeping all professionals updated and informed of new practices in order that patients can benefit from these innovations.
• Palliative care is no exception, indeed, you may have seen some television programmes highlighting the need for improvements in supporting those faced with a life limiting illness.
• This has shown publicly how palliative care is rapidly advancing.
• Advancement means an even greater need to enlighten and inform, not just healthcare professionals, but also the public, it is after all an issue which will at some point affect each us.

RESEARCH

NURSES ROLE

1.  Providing direct care
2. Advocate
3. Counselor
4. Collaborative Role

1. PROVIDING DIRECT CARE

2. ADVOCATE

NURSE AS PATIENTS ADVOCATE

1. Protects patients rights.
2. Works on patient behalf.
3. Makes sure the patient is an active participant in deciding what type of treatment he/ she will have.
4. Protects the patients right to have the treatment he/ she have chosen.
5. Recognize the significance of the meaning of the illness and the death for the family.

“ How people die remains in the memories of those who lives on.”

-As a person is dying, the nurse advocate acting as a supporter can provide much- needed comfort and reassurance to the family members as they try to make sense of their impending loss and a future without their loved one.

EXAMPLE OF HOW NURSE PROTECT THE INTERESTS OF THEIR PATIENT

An uninsured homeless man is being released from the hospital, but has no one to care for him and nowhere to go. The nurse calls a social service organization and makes arrangements for his care.

3. COUNSELOR

COUNSELLING

-“Any relationship in which one person is helping another person to better understand and solve some problem” (CMR Canada (2003)).

-“The process of helping a client recognize and cope with stressful psychologic or social problems, to develop improved interpersonal relationships, and to promote personal growth” (Kozier, Erb, and Blais, 1997).

-The nurse in this role, is there to help a client to develop and see new feelings, behaviours and attitudes.

-This role require great communication skills.

-The nurse in this role may have to lead group counselling sessions, or one to one counseling and be very understanding.

THE NURSE AS A COUNSELOR MUST:

1. Be willing to model, and teach the desired behaviours, must be sincere when dealing with clients.
2. Also demonstrate interest and caring in the welfare of others.
3. Be very inventive.
4. Have a great sense of humor.
5. Have a very flexible attitude.

WITHOUT THIS ROLE:

1. A client may not be willing to help themselves- no one to guide them in bettering themselves.
2. Clients would come back to the healthcare system with no improvement of themselves- no one was there in the first place to guide them properly.
3. COLLABORATIVE ROLE

-collaborate with other providers to give consistent information.

SEVEN (7) CRITICAL NURSING BEHAVIOURS IN PALLIATIVE CARE (Degner et al (1991)

1. Responding during the death sense.
2. Providing comfort
3. Responding to anger
4. Enhancing personal growth
5. Responding to colleagues
6. Enhancing the quality of life during dying
7. Responding to the family

DEFINITIONS OF THE NURSE IN PALLIATIVE CARE

1. Supportive
2. Intensive caring, collaboration, continuous knowing and continuous giving
3. Fostering hope
4. Providing comfort
5. Providing an emphatic relationship
6. Clinical, consultative with teaching, leadership and research functions
7. Being there and acting on the patient’s behalf

THANK YOU VERY MUCH!

PROF. ALBERT C. APILADO

Jan. 15, 2011

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