management of adults requring Hospice and palliative care

this is a brief presentation of management of adults requring palliative care

1. Hospice and palliative care

2. Learning Outcomes for unit 7 By the end of this unit the student should be able to : Define key concepts Differentiate between palliative and hospice care Describe the end-stage of life Describe nursing care during palliative and hospice care Discuss ethical issues regarding palliative and hospice care

3. Palliative and hospice care defined 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” (WHO 2002) Palliative care has also been defined as follows : “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 (The National Consensus Project)

4. Palliative and hospice care defined cont … Hospice care is a type of health care that focuses on the palliation of terminally ill patients pain and symptoms and attending to their emotional and spiritual needs at the end the end of life. Hospice patients usually have a poor prognosis given about 6 months left to live. Hospice care prioritizes comfort and quality of life by reducing pain and suffering.

5. Differences between palliative and hospice care

6. Palliative care 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 Whatever the diagnosis the goal is to improve the quality of life for both patient and family. It is administered by a team of professionals that specializes in palliative care. An important difference between palliative care and hospice care is that palliative care can be provided along with curative treatment.

7. Palliative care cont.. 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

8. Palliative care cont.. Aims of Palliative Care in Malawi ( MoH 2012) It helps people with incurable illness and their families live more comfortable, active and hopeful lives It provides relief from pain and other distressing symptoms It affirms the patients life and to regard dying as a normal process It neither hasten nor postpone death It acknowledges the physical, social, psychological and spiritual aspects of the patients care It offers care and support in order to allow patients to live as actively as possible until death It offers care and support to the family and their guardians during the patients illness and in their own bereavement It supports the patient and family in grief

9. Palliative care cont.. Components/elements of palliative care in Malawi are as follows ( MoH , 2012): Basic nursing care Pain relief and symptom control Infection prevention ad control Psychosocial, spiritual End of life care (care of the dying) and bereavement care Nutrition support where feasible

10. Palliative nursing care cont.. Globally WHO defines the key elements of palliative care: It 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 Provide relief from pain and other distressing symptoms Affirm life and regard dying as a normal process Intend neither to hasten nor postpone death Integrate the psychological and spiritual aspects of patient care Offer a support system to help patients live as actively as possible until death Offer a support system to help the family cope during the patient’s illness and in their own bereavement Use a team approach to address the needs of patients and their families, including bereavement counseling, if indicated Enhance quality of life, and may also positively influence the course of illness

11. Palliative care cont.. In addition the NCP’s 11 key elements of palliative care are described below: 1. Patient population The population served includes patients of all ages experiencing a debilitating chronic or life-threatening illness, condition, or injury. 2. 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. 3. 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.

12. Palliative care cont.. 4. 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

13. Palliative care cont.. 5.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.

14. Palliative care cont.. 6. 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 symptoms and psychological distress. 7. 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. 8. 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.

15. Palliative care cont.. 9. Continuity of care across settings Palliative care is integral to all health-care 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 home care settings. Proactive management to prevent crises and unnecessary transfer are important outcomes of palliative care. 10.Equitable access Palliative care teams should work toward equitable access to palliative care across all ages and patient populations, all diagnostic categories, all health-care settings, including rural communities, and regardless of race, ethnicity, sexual preference, or ability to pay.

16. Palliative care cont.. 11. 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

17. Palliative care cont.. Models of Palliative Care Delivery in Malawi Malawi has 5 models of palliative care as follows: Model 1: In-patient care Takes place in a separate building either a ward in a general hospital that admits palliative care patients It is ideal for patients who cannot be looked after at home for medical or social reasons Model 2: Home Based palliative care Care is provided at home mainly by family, close friends and relatives The patient is familiar with the environment Health workers often come as a home visit, once or more times per week to help with supportive measures, counselling, and pain and symptom control On each visit palliative care team assesses the patient and provides care holistically. If hospital admission is indicated the team recommends that the patient be admitted to a hospital for close follow up. Volunteers play an important role in the provision of day to day care and linking the patient with health workers if need arises

18. Palliative care cont.. Model 3: Hospital Palliative Care Team The hospital has a palliative care team: at least one doctor and nurse with palliative care experience, and can access to other hospital services. The team receives referrals from consultants of patients from other wards or the community Patients are therefor seen in wards where there other general patients The model has an end-of-life care room that patients in terminal phase of life are managed The team works hand in hand with a community nurse and is prepared to go out to visit difficult cases in the homes Upon discharge from the hospital a follow up plan is made with the patient, hence the patient may be referred for care to other models of care

19. Palliative care cont.. Model 4: Palliative Day Care Patients come for one or more days a week to a center which may be attached to another service ( e.g hospital) They will often spend 5 to 6 hours at each visit during this time patients are assessed and treatment given. Other diversional therapies are also given and patients take part in creative activities such as music, painting etc Patients may form strong friendships with other patients; which can be very therapeutic, preventing isolation and enabling patients to share thoughts and feelings with others who are experiencing similar problems, however when patients die others will be bereaved. Volunteers are the key part of the model Day care services may vary in terms of criteria for acceptance of referrals and the emphasis of care Model 5: Outreach Clinic This is where the mobile team has a monthly clinic at the health facility usually some distance from the parent organization Patients and families who can travel meet the team there. Patients too sick to go to the health facility are visited at home by the local health professionals who follow them up.

20. Hospice Care Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing life limiting illness. It is delivered using an interdisciplinary approach with the patient and the family at the center of care Hospice care provides compassionate care for people in the last phases of uncurable disease so that they may live as fully and comfortably as possible during the end stage of life. Therefore understanding the death and dying process for both the patient and family as well as nurse providing care is very important.

21. Hospice Care cont..

22. Hospice Care cont.. There are Four Levels of Hospice care (applicable to the western countries) whereby patients and their families can chose the level of care they prefer namely Routine care Continuous care Inpatient care Respite care Routine care Also referred to as routine home care or intermittent home care Is the most popular level of care

23. Hospice Care cont.. Routine care refers to a series of regularly scheduled visits to help the patient who is dealing with a terminal illness and their family It may include nursing services for pain relief and symptom management, physical and occupational therapy, social services, at home medical supplies and health aide services. Each routine care plan is tailored specifically for the patient and their family Hospice providers base each individual plan on the amount of care required and the preference of the patient. Patients can still receive unscheduled visits when necessary Most hospice care provider services have nurses that are available around the clock even for patients who are at the level of routine care

24. Hospice Care cont.. 2. Continuous Care It is for patients with more severe need for symptom management and palliative care. Usually patients who require continuous level care are dealing with acute symptoms. Continuous care is often available overnight, meaning a nurse may stay in the home and monitor the symptoms overnight. In some instances continuous acre is offered as a way to assist the patient and their family if the patient is actively dying (presenting with symptoms of death) Usually this level of care is managed by nurses unless symptoms grow too severe then inpatient care is required

25. Hospice Care cont.. 3. Inpatient care Often hospice patients feel more comfortable receiving care in an inpatient care facility ( e.g. hospice care facility, nursing home or any other form of assisted living facility) Maybe required if their acute symptoms are so severe it requires immediate medical attention 4. Respite care It is temporary relief for the primary care giver It is more for the caregiver than it is for the hospice patient When caregivers feel overwhelmed they can request respite care This allows the hospice patient to temporarily check into a hospice care facility for 5 days to give the primary care giver time to rest

26. End stage of life Death is inevitable Older adults who are terminally ill or very old and frail anticipate death The end of life period -when body systems shut down and death is imminent - typically lasts from a matter of days to a couple of weeks. Some patients die gently and tranquilly, while others seem to fight the inevitable Reassurance from a loved one that it is okay to die can help both the patient and family through the process Providing comfort during this stage is of utmost importance Patients/Families may sometimes request a chaplain

27. End stage of life cont … Kubler-Ross Grief Cycle consists of the five stages, denial, anger, bargaining, depression and acceptance that are part of the framework that enables us to understand the emotions that a dying patient and their family might be going through Ideal time of passing through these stages by the patient and family varies Counselling is of utmost importance to help the patient/family cope and reach a resolution through each stage since sometimes one can get stuck in one stage for instance depression .

28. End stage of life cont …

29. End stage of life cont..

30. End stage of life cont … Signs and symptoms that death is imminent include: Decreased level of consciousness Cold hands and feet Diaphoresis Pain Loss of appetite Pale skin Loss of muscle tone (bladder or bowel problems) Labored or Cheyne-stokes respirations Death rattle Vital sign changes (Changes in blood pressure, breathing and heart rate, Weak irregular pulse, slow pulse) Blank , staring expression Jaw drops Mottling of skin (has patchy and irregular colors)

31. Nursing care during Palliative and hospice care Guiding principles and approaches to palliative care ( MoH , 2012) The following principles should be observed for effective provision of palliative care services in Malawi; Attention to detail : Time spent can bring great relief to the patient Honesty and respect : This should be shown at all times and the truth given when asked for, in terms understandable by the patient. False reassurance helps no one A holistic approach : Concern for the emotional, spiritual and social aspects of the patients care as well as controlling their physical symptoms A patient centered approach : To deal with what the patient thinks is the most important aspect in all aspects of his/her care A problem oriented approach : Taking time to deal with each problem, no matter how small

32. Nursing care during Palliative and hospice care cont … In addition globally the Institute of Medicine has identified six aims for quality health-care delivery in the provision of palliative and hospice services. They include the following: 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 in need and who could benefit Knowledge and evidence-based Efficient and designed to meet the actual needs of the patient and not wasteful of resources

33. Ethical consideration for palliative and hospice care Ethics is a process of reflecting on moral beliefs, and bioethics refers to the study and analysis of ethical issues that arise in the fields of health care and biological sciences. Nursing ethics comprises one dimension of bioethics. Ethical and Spiritual Caring represent one branch of the End-of-Life Caregiving; both involve the search for meaning and acting in a manner that is consistent with the deepest human values. Key ethical principles to abide by Doing Good (Beneficence) Avoiding Harm (Nonmaleficence) Respecting Freedom (Autonomy) Speaking Truth (Veracity) Loyalty (Fidelity) Respecting Equality (Justice)

34. Discussion !!! In the Malawian context how is palliative and hospice care provided in regards to the aging population (by who, where, what does it entail?) What is the nurses role in the Malawian context in the provision of palliative and hospice services for the elderly? Is the aged patient and their family at the center of palliative and hospice care in Malawi and are they involved in decision of care? What are some of the challenges faced in the provision of palliative and hospice care in Malawi to the elderly population? How can we mitigate these challenges??

35. End of lesson

36. References J.V. Zerwekh (2006) Nursing Care at the End of Life Palliative Care for Patients and Families. F. A. Davis Company publishers • Philadelphia. USA. S. Yennurajalingam & E. Bruera (2011)Oxford American Handbook of Hospice and Palliative Medicine. Oxford University Press, Inc publishers . New York. USA Ministry of Health (2012) Community Home Based Care (CHBC) Service Providers-Implementers manual. Lilongwe. Malawi