End of life care

END OF LIFE CARE M.Sc NURSING I YEAR ADVANCE NURSING PRACTICE

1. END OF LIFE CARE Presented By: -Mr. Madan Mohan Gupta, Assistant Professor, Faculty Of Nursing, Rama University, Kanpur

2. Introduction Life and death is the two main stages in a human beings life where we come across many challenges, diseases and other problem. It refer to health care not only of patients in the final hours or days of their lives, but more broadly care of all those with a terminal condition that has become advance, progressive and incurable.

3. The time at the end of life is different for each person. Each individual has unique need for information and support. Knowledge about end of life decision and principles of care is essential to support patient during decision making and in end of life closure in ways that recognize their unique response to illness to support their values and goals.

4. Definition It is concluding phase of normal life span although life can end at any age.

5. Disease progress bereavement Disease Death Life-prolonging and restorative treatments Palliative care Hospice care

6. Goal Provide comfort and supportive care during process. Improve the quality of remaining life. Help to ensure dignified death.

7. Principles Respecting patient goals, preferences, and choices. Attention of the medical, emotional, social, and spiritual needs of the dying person. Using strengths of interdisciplinary resources. Acknowledging and addressing care giver concerns. Building mechanism and system of support.

8. Technology and end of life care Technological advances in health care have extended and improved the quality of life for many, abilities of technology to prolong life beyond the point that some would considered meaningful has raised troubling ethical issues.

9. Changes at end of life 1. Physical changes- Sensory changes Hearing and touch Taste and smell Integumentary system Cardiovascular system Respiratory system Urinary system GI system Musculoskeletal system

10. 2.Psychological changes: Variety of feelings and emotions affect the dying patient and family at the end of life. GRIEF: - It is the emotional and behavioral changes to loss. It is positive coping mechanism which also helps in individual well being.

11. Stages of grief:- D- denial A- anger B- bargaining D- depression A- acceptance

12. Legal documents used in end of life care Advance directives Durable power of attorney Medical power of attorney Directives to physicians Directives to physicians Organ and tissue donation Euthanasia Resuscitation

13. Different care at the end of life Palliative care Hospice care Spiritual care

14. Hospice care Hospice word HOSPES meaning HOST. Hospice refers to a shelter or way station for weak travelers on a pilgrimage. Hospice is a concept of care that provides compassion, concern, and support for the dying.

15. Core aspect of Hospice Care Patient/family focused Interdisciplinary Provides a range of services: Interdisciplinary case management Pharmaceuticals Durable medical equipment Supplies Volunteers Grief support

16. Cont….. Hospices offer additional services, including: Hospice residential care (facility) Inpatient hospice care Palliative care Complementary therapies Specialized pediatric team Caregiver training classes

17. Principles of Hospice Death must be accepted. Total care managed by multidisciplinary team. Pain and other symptoms of terminal illness must be managed. Patient and family views as a single unit of care. Home care of dying necessary. Bereavement care to family members.

18. Hospice Care Focus Focuses on the whole person Mind Body Spirit Support and care Patients Family and caregivers Continues after death of a loved one

19. Eligibility for Hospice Care Advance disease with life expectancy of 6 month or less given natural course of disease. Poor functional/ nutritional status. High morbidity / mortality markers. Patient or family must give consent. Payment sources.

20. Hospice Care Members The patient's personal physician Hospice physician (medical director) Nurses Home health aides Social workers Clergy or other counselors Trained volunteers Speech, physical, and occupational therapists

21. Hospice settings Freestanding Hospital Home health agencies with home care hospice Home Nursing home or other long-term-care settings

22. Care includes Manages pain and controls symptoms Assesses patient and family abilities to cope Identifies available resources for patient care Recognizes patient wishes Assures that support systems are in place

23. Function of hospice team Develops the plan of care Manages pain and symptoms Attends to the emotional, psychosocial and spiritual aspects of dying and care giving Teaches the family how to provide care Advocates for the patient and family Provides bereavement care and counseling

24. PALLIATIVE CARE “Palliative care is an approach to care that improves the quality of life of patients and their families facing problems 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, psychological and spiritual”.

25. Palliative care is the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount.

26. Goal The goal is to improve the quality of life for individuals who are suffering from severe diseases. Palliative care offers a diverse array of assistance and care to the patient.

27. Principles Focus on quality rather than quantity of life Life affirming but death accepting Effective communication at all levels Respect for autonomy and choice Effective symptom management Holistic, multi-professional approach Caring about the person and those who matter to that person

28. Key Issues Information needs Being treated as a human being Empowerment Physical needs Continuity of care Psychological needs Social needs Spiritual needs

29. Palliative team Consultant in Palliative Medicine 3 Clinical Nurse Specialists Clinical Specialist Occupational Therapist Secretary Clinical Specialist Dietician Clinical Specialist Speech and Language Therapist Pharmacist

30. Function of palliative care team Advise on management of symptoms Provide information on diagnosis, investigations and treatments Offer emotional, spiritual and social support Liaise closely with the whole health team with the aim of improving the patients quality of life Offers support via education to healthcare staff

31. Palliative Care Approach Not a “one size fits all approach” Care is tailored to help the specific needs of the patient Since palliative care is utilized to help with various diseases, the care provided must fit the symptoms. Delivered by the patient’s usual professional carers as a vital and integral part of their routine care delivery For patients with low to moderate complexity of need Focuses on the key principles of palliative care (NCHSPCS , 2002 )

32. Recommended for Patients with rapidly progressive disease Patients with disease presenting unexpected, difficult to control, or rapidly progressing symptoms Distressing symptoms, when no relief has been achieved within 48 hours Psycho-social distress in patient or family relating to the diagnosis or in facing death Where reassurance of a second opinion is sought by patient, family or other health care professional.

33. Philosophy of palliative care Should be available to anybody with a life threatening illness Focus of care is quality of life, with the autonomy and choice of the patient being upheld Care is extended to both the patient and those who matter to him/her A whole system approach is made when planning care with the patient

34. Palliative care should be delivered by any health/social care professional in care setting of patient’s choosing Palliative care should begin at diagnosis of life threatening condition, continuing through to death/ bereavement Specialist Palliative Care is defined in terms of core services, delivered using multi-professional team with skills, knowledge and experience in palliative care Specialist Palliative Care is needed by only a minority of people with complex problems

35. Spiritual Care Spirituality means features of religiosity, but the two concepts are interchangeable. Spirituality involve the search for meaning and purpose in life and relatedness to a transcendent dimensions.

36. Spiritual Assessment S- spiritual belief system P- personal integrity I- integration and involvement with others R- ritualized practice and restrictions I- implication for medical care T- terminal event planning

37. Aspects of End of Life Care Palliative care Preparation of end of life Care for terminally ill child Hospice care Advance directives Understanding CPR and DNR

38. Preparation of end of life Despite a doctor best efforts and hard work, disease treatment sometimes stop working and a cure or long term remission is no longer possible. The stage is called Advanced Terminal End stage

39. Signs of approaching death and care after death Progressive weakness Needing sleep or bed rest Weight loss and muscle wasting Loss of appetite Loss of interest Slow breathing Incontinence hallucinations

40. Cont…. Decreased amount of urine Disorientation Cool skin on touch Decrease activity Physical restlessness

41. Barriers to Quality End-of-Life Care Failure of healthcare providers to acknowledge the limits of medical technology Lack of communication among decision makers Disagreement regarding the goals of care Failure to implement a timely advance care plan

42. Lack of training about effective means of controlling pain and symptoms Unwillingness to be honest about a poor prognosis Discomfort telling bad news Lack of understanding about the valuable contributions to be made by referral and collaboration with comprehensive hospice or palliative care services

43. Pronouncement of death Absence of carotid pulses Pupils are fixed and dilated Absent heart sounds Absent breath sounds

44. Postmortem care Needs to be done promptly, quietly, efficiently, and with dignity Straighten limbs before death, if possible Place head on pillow After pronouncement Remove tube Replace soiled dressings Pad anal area

45. After pronouncement care: Gently wash body to remove discharge, if appropriate Place body on back with head and shoulders elevated Grasp eyelashes and gently pull lids down Insert dentures Place clean gown on body and cover with clean sheet

46. Follow principles acc. To hospital policy Note time of death and chart Notify attending physician Chart any special directions Notify family member Allow time with loved one Gather eyeglasses and other belongings Prepare necessary paperwork for body removal

47. Role of nurse Holistic view Comprehensive Effective Compassionate Cost effective

48. Spend the most time with patients and their family members at the end-of- life than any other member of the healthcare team Provide education, support, and guidance throughout the dying process Advocate for improved quality of life for the person with serious illness Attend to physical, emotional, psychosocial, and spiritual needs of the patient. Have appropriate supports in the clinical setting Develop close collaborative partnerships with hospice and palliative care service providers

49. Attend to pain and symptom control Relieve psychosocial distress Coordinate care across settings with high-quality communication between healthcare providers Prepare the patient and family for death Clarify and communicate goals of treatment and values Provide support and education during the decision-making process, including the benefits and burdens of treatment Are well educated.

50. Must be confident in their clinical skills Are aware of the ethical, spiritual, and legal issues they may confront while providing end-of-life care Improves ability to meet holistic needs of the patient and family Clarifies one’s own beliefs and values

51. Thank you