Palliative Care. Treating the patient as well as the disease. Kelly Baxter, APRN Connie Ducharme, RN

Transcription

1 Palliative Care Treating the patient as well as the disease Kelly Baxter, APRN Connie Ducharme, RN CNE Palliative Care Team in collaboration with Healthcentric Advisors, Warwick Coalition

2 Objectives To understand the difference between palliative care and hospice Ability to identify patients who are appropriate for palliative care and how to place a referral Improve knowledge of communication skills that are helpful when discussing goals of care

3 Definition Palliative Care is specialized medical care for patients with serious illness. The focus is on relief of symptoms, pain and stress of a serious illness, whatever the diagnosis. It is appropriate at any stage of illness and can be provided along with curative treatment. (CAPC, 2012) 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. (CMS, HHS, NQF)

4 Palliative care is appropriate for patients in all disease stages, including those undergoing treatment for curable illnesses, and those living with chronic diseases, as well as patients who are nearing end of life. Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It improves the ability to tolerate medical treatments and help patients have more control over their care. It improves communication between the patient, family and physician.

5 Features that characterize palliative care philosophy and delivery of care Care is provided and coordinated by an interdisciplinary team. Patients, families, palliative and non-palliative healthcare providers collaborate and communicate about care needs. Services are available concurrently with or independent of curative or life-prolonging care Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process and after death. (Clinical Practice Guidelines for Quality Palliative Care, National Concensus Project, 3 rd edition)

6 Initiated early in an illness, palliative care can enhance quality of life, provide relief of pain and distressing symptoms and offer support to help patients and families cope during the progression of an illness. The goal is to provide patient focused care with special attention to quality of life and advocacy for honoring patients wishes about their healthcare.

7 7 (American Cancer Society)

8 Why We Need Palliative Care 90 percent of Americans die after living with chronic and progressive illnesses, and they are at risk for distressing symptoms. The specialty of palliative care has emerged and expanded in response to these changing demographics and to a resultant gap in care options. (Healthcentric QIO, Palliative Care Collaborative, 2014)

9 Why Palliative Care in Nursing Homes 1.5 million Americans live in a nursing home By the year 2030, this is projected to increase to 3 million Almost half of these people will spend time in a nursing home before death and with a serious or chronic illness (Healthcentric QIO, Palliative Care Collaborative, 2014)

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11 While palliative care may seem to offer a broad range of services, the goals of palliative treatment are concrete: relief from suffering, treatment of pain and other distressing symptoms, psychological and spiritual care. This specialized care guides the patient and family as they face disease progression and changing goals of care, and helps those who wish to address issues of life completion and life closure.

12 A Palette of Care

13 Difference between hospice & palliative care Palliative care eligible at any stage of chronic illness provided along with curative treatment provides assistance with clarification of goals of care, as well as expertise in symptom management Hospice care certified terminal illness with a life expectancy of <6 months as defined by Medicare Hospice guidelines The direction of care shifts from aggressive curative treatment to comfort focused care

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15 Who can benefit from palliative care Patients that are eligible for palliative care are those with serious chronic illness such as: -COPD/pulmonary fibrosis -Heart Disease -Dementia -Cancer -Liver disease/renal disease -Parkinson s dementia, ALS, MS -CVA

16 PALLIATIVE CARE SCREENING TOOL Criteria Please consider the following criteria when determining the palliative care score of this patient 1. Basic Disease Process SCORING a. Cancer (Metastatic/Recurrent) d. End stage renal disease b. Advanced COPD e. Advanced cardiac disease i.e. CHF, Score 2 points EACH c. Stroke (with decreased severe CAD, CM (LVEF < 25%) function by at least 50%) f. Other life-limiting illness 2. Concomitant Disease Processes Score 1 point overall a. Liver disease d. Moderate congestive heart failure b. Moderate renal disease e. Other condition complicating cure c. Moderate COPD 3. Functional status of patient Score as specified Using ECOG Performance Status (Eastern Cooperative Oncology Group) below ECOG Grade Scale 0 Fully Active, able to carry on all pre-disease activities without Score 0 restriction. 1 Restricted in physically strenuous activity but ambulatory and Score 0 able to carry out work of a light or sedentary nature, e.g., light housework, office work. 2 Ambulatory and capable of all self-care but unable to carry out Score 1 any work activities. Up and about more than 50% of waking hours. 3 Capable of only limited self-care; confined to bed or chair more Score 2 than 50% of waking hours. 4 Completely disabled. Cannot carry on any self-care. Totally Score 3 confined to bed or chair. 4. Other criteria to consider in screening Score 1 point EACH The patient: a. is not a candidate for curative therapy b. has a life-limiting illness and chosen not to have life prolonging therapy c. has unacceptable level of pain >24 hours d. has uncontrolled symptoms (i.e. nausea, vomiting) e. has uncontrolled psychosocial or spiritual issues f. has frequent visits to the Emergency Department (>1 x mo for same diagnosis) g. has more than one hospital admission for the same diagnosis in last 30 days h. has prolonged length of stay without evidence of progress i. has prolonged stay in ICU or transferred from ICU to ICU without evidence of progress j.. Is in an ICU setting with documented poor or futile prognosis SCORING GUIDELINES: TOTAL SCORE TOTAL SCORE = 2 No intervention needed TOTAL SCORE = 3 Observation only TOTAL SCORE = 4 Consider Palliative Care Consult ( requires physician order)

17 Referrals Identify patient as appropriate for palliative care Obtain an order from the treating clinician Referral to agency of choice at your facility

18 GO WISH EXERCISE

19 Conversation Project The conversation project is a public engagement campaign, whose goal is to ensure that everyone s wishes for end of life care are expressed and respected. This initiative is led by Pulitzer Prize winning author, Ellen Goodman, in collaboration with the Institute for Healthcare Improvement (IHI). National media campaign Uses social and traditional media Website and tools to help people get started Working with employers, faith-based groups, large communities Change culture around end-of-life conversations in America and beyond

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21 American Nurses Association Nurses have a responsibility in the care of the dying to educate patients and families about end of life issues, encourage the discussions of life preferences, communicate relevant information for the decisions made and advocate for the patient. ANA Position Statement on Nursing care and DNR Decisions

22 Why the discussion Allow for Good Death Comfortable Having a sense of closure Trust in caregivers Recognizing impeding death Leaving a legacy (Kehl KA, American Journal Hospice Palliative Care 2006)

23 Communication in Advanced Illness Explains why the illness is advanced Reviews treatments that have been tried Explains the probable course of the advanced illness Clarifies the treatment options when focus chances from cure to comfort and quality of remaining life

24 Role of Nursing Home Staff Constant in the patients journey Familiar with the medical history Health status changes Team discussions Family dynamics Expressions of thoughts, concerns and values Can support the patient advocate (Healthcentric QIO, Palliative Care Collaborative, 2014)

25 Barriers to having the conversation Lack of experience Fear of saying the wrong thing Fear of emotions (own or patient or family) Feeling of guilt because they are not able to do more Disagreement with the patient or family goals of care Moral distress

26 More Barriers Perception that patient and family are unwilling to confront a terminal prognosis or hospice care Inability to communicate Perception of physician reticence Personal discomfort with the conversations Desire to maintain hope of patients and families (Healthcentric QIO, Palliative Care Collaborative, 2014)

27 Unfortunate Consequences Team uncomfortable participating in end of life discussions Impending death not known Multiple transitions Aggressive end of life care Lack of life closure

28 Communication The use of language in discussions surrounding advance care planning is very important. It is not only essential to have the conversation, but how to have the conversation. Effective communication is the core of palliative care. The way you communicate is part of your work as a healer. You re not born with communication skills, you learn them. Anthony Back, MD

29 Therapeutic communication Effective listening Appropriate nonverbal communication Reflection Clarification Empathy Supportiveness

30 Assess understanding of diagnosis or prognosis How are things going? What is your understanding of what has happened? What have the doctors told you about your condition?

31 Exploratory questions Tell me more Can you explain what you mean? Can you tell me what you are worried about? How can I be of help to you?

32 Assess Patient Support & Coping Mechanisms Who are the important people to be at a family meeting? Is there anyone you rely on to help you make important decisions? Where are you getting your support? What/who is helping you the most? How does the family communicate with each other? Can you anticipate any areas of concern for the family? Is this the most stressful time in your life? How have you handled stress in the past?

33 Defining goals of care What is it you hope for in the next few months? What are your goals? What is important to you right now? Is there anything that you are afraid of?

34 Discussions with the Healthcare Decision Maker Tell me about your loved one. Tell me about his/her life so that I can learn a little about him or her as a person. What is important to him/her? Has there ever been discussions about what would be important at end of life? Was there any discussion about the sort of care that he/she would or would not want if terminally ill?

35 Communication Tools There are a number of communication tools that are helpful in having effective conversations. Examples: Ask-Tell-Ask Tell me more I wish statements

36 Communication Tools NURSE: Ways to articulate empathy which continues conversations Name, Understand, Respect, Support, Explore (Evans, Tulsky, Arnold, 2000) The Hope/Worry Technique: I hope that you will do well for a long time, but I worry that it could be as short as a few months Acknowledges uncertainty, aligns with the patient, allows clinician to be honest about prognosis Hope for the best, plan for the worst (Evans, Tulsky, Back, Arnold, 2006)

37 SPIKES Helpful steps when preparing the patient and family for delivering bad news S: Setting up the discussion P: Perception of the situation I: Invitation to provide information K: Knowledge given to the patient E: Emotions addressed with empathy S: Summary to learn what patient heard and discussion of any concerns. (Baile, Buckman, Lenzi, Glober, Beale, Kudelka 2000)

38 Communication Tools Talking Map: REMAP Reframe why status quo isn t working Expect emotion, respond with empathy Map out what s important Align with patient values Plan to match values (Vital Talk.org)

39 Communication Tools Solar: Non-verbal expressions of empathy S: squarely face the patient O: open body posture L: lean toward the patient E: eye contact R: relaxed posture (Egan 2009)

40 Words that Work Language that has been helpful in my practice: What is your understanding of your illness? DNR/DNI does not mean do not treat Do not use withdrawal of care but rather redirecting care Want to be sure we are doing everything you would want us to do, and nothing more than you would want Allowing natural death Hope for the best but prepare for the worst

41 Communication Caveats Weigh risks and benefits of treatments Educating patients and families re: disease trajectory, clinical changes, present and anticipatory symptoms as well as prognosis to enable them to make a well-informed decision re: their health. Incorporate cultural, spiritual beliefs Verbal and nonverbal communication Consistent use of language

42 Communication Caveats Delivery of prognostic information in a manner that supports coping Balancing support of hope with the need for honest information Fostering a therapeutic relationship Never meant to be one conversation, ongoing Listen to your patient

43 MOLST Medical Order for Life Sustaining Treatment Healthcare provider (MD, NP, PA) Transportable among healthcare settings Allows patients to choose medical tx they want to receive, and identify those they do not want. MOLST is a medical order

44 Don t ask what s the matter with me, ask what matters to me.

45 Resources Center to Advance Palliative Care (CAPC) CNE web-based videos com The Conversation Project Medical Orders for Life sustaining treatment (MOLST), State of Rhode Island Department of Health: ersforlifesustainingtreatment

46 Resources National Hospice and Palliative Care Organization Nursing Home Palliative Care Toolkit urces/n.html

47 References American Cancer Society ANA Position Statement on Nursing care and DNR Decisions Center to advance palliative care (CAPC,2012) Clinical Practice Guidelines for Quality Palliative Care, National Concensus Project, 3 rd edition) Institute for Healthcare Improvement (2013). Conversation Ready Healthcare Community. Retrieved from: dycommunity/pages/default.aspx National Institute of Nursing Research (2009). Palliative Care: The Relief You Need When You re Experiencing the Symptoms of Serious Illness. The National Institute of Health. Retrieved from:

48 Meier DE, Isaacs SL, Hughs RG. (Eds) Palliative Care: Transforming the care of serious illness. Robert Wood Johnson Foundation: Jossey- Bass. Page 60. National Quality Forum (NQF) Life_Care.aspx Palliative Care Screening Tool, Capc Palliative Care Services Guidelines: Health Canada, By the minister of Public Works and Government services, Canada, 1989

49 Contact Information Kelly Baxter, MS, APRN,ACHPN CNE Palliative Care, Kent Hospital 455 Tollgate Rd. Warwick, RI # , x35456 Connie Ducharme, RN, ACHPN Palliative Hospice Liaison, VNA of Care New England Conversation Nurse 51 Health Lane Warwick, RI # , x31590