Quality End of Life Care: A Team Approach

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1 Quality End of Life Care: A Team Approach

2 Presented by Dann Baker, MDiv Director Pastoral Care & Ethics, JPS Health Network; Adjunct Assistant Professor, UNTHSC-TCOM Janet Lieto, DO, FACOFP Assistant Professor of Medicine, UNTHSC-TCOM Anne Long, RN, JD, CPHQ Chief Compliance and Enterprise Risk Management Officer UNTHSC Moderated by David Farmer, PhD, LPC, LMFT Director of Interprofessional Education; Assistant Professor of Medical Education - UNTHSC

3 Objectives Describe the process and benefits of shared decision making on end of life care through a collaborative interprofessional team based approach. Discuss the importance of respecting the cultural and spiritual diversity that characterize patients and their families. Identify the unique and shared roles and responsibilities of care team members in resolving ethical dilemmas in patient care decisions. Demonstrate collaborative team communication strategies to build trust and understanding and promote improved patient outcomes.

4 A typical case 82 year old female Mary arrives in your subacute unit for rehab Electronic Medical Records? History Physical Labs, and missing data Goal of Care, the patient

5 I wanna go home Patient has dementia GOC is to go home

6 Who should make the decision for this patient? 1. The patient can make her own decisions-she has the capacity 2. The daughter should make the decisions 3. The patient and daughter together 4. The advance directive will state who makes the decision

7 Legal? Capacity Competency Advance Directives in Texas o Directive ( Dear Doctor, Living Will ) o Medical Power of Attorney o Out of Hospital DNR o Declaration for Mental Health Treatment

8 What would you do next? 1. Have a social worker meet with the patient for discharge planning 2. Tell them she will be here for 2 weeks, as medicare pays 100% 3. Discuss what goals have to be met to go home 4. Have the occupational and physical therapist assess the patient for potential discharge date

9 The daughter s role She is the agent in the Medical Power of Attorney The patient s husband is deceased She is the only child Who makes decisions for others in the state of Texas?

10 No AD- Who decides?? Patient s spouse Patient s reasonably available adult children Patient s parent; or Patient s nearest living relative None of the above? Concurrence of treatment decision by a non-treating physician May be a court ordered guardian

11 The Nurses Call The Hemoglobin is 6.8-What s Next 1. Transfuse 2 units of PRBCs 2. Start iron, by mouth 3. Start iron, by IV 4. Transfer the patient to the hospital 5. Give IV Fluids

12 What s next? When all else fails speak to the patient, or the decision maker

13 Conversation on the phone with the daughter She does not want her mom to go back to the hospital Her mom is confused Past conversations between the patient and daughter Spiritual and ethical conversations held prior to your meeting the patient

14 The rest of the story Daughter relates why medical records appear missing Patient pulled out her IV, refused all labs or aggressive work up The hospital sent her to rehab to get stronger What did the hospital appear to fail to do?

15 Who should help you with this case? 1. The patient s lawyer 2. The social worker 3. The hospital discharge planner 4. Your lawyer 5. Nobody, you got everything that you need

16 Patient s Rights Autonomy Capacity Competency How much documentation do you really need to make these decisions?

17 What would you have done if this patient walked into your office? 1. Sent the patient to the hospital immediately 2. Requested hospital medical records 3. Taken the daughter s word for everything 4. Asked for the Advance Directive documentation 5. Called Adult Protective Services

18 The daughter refuses to send her mom to the hospital. You should: 1. Send the patient to the hospital, the patient could die if you don t 2. Call an ethics meeting 3. Try to convince the daughter her mom needs a higher level of care 4. Talk to the patient about what she wants 5. Continue with current plan of care

19 Understanding the consequences of refusing medical care Using direct words Not sugar coating the situation Prognostication Ethical concerns

20 What other services may help this family 1. Palliative Medicine Consult 2. Hospice Care 3. Home Care 4. Case Management 5. All of the above?

21 Death and Dying in America Disparity between the way people die/the way they want to die Patient/family perspective

22 Curative and Palliative Approaches to Care Curative/Disease Focus Diagnosis of disease & related symptoms Curing of disease Treatment of disease Alleviation of symptoms Palliative Focus Pt/family identify unique endof-life goals Assess how symptoms, issues are helping/ hindering reaching goals Interventions to assist in reaching end-of-life goals Quality of life closure

23 Barriers to Quality Care at the End of Life The realities of life limiting diseases Lack of adequate training of professionals Delayed access to hospice/palliative care Need for Palliative Care

24 Principles of Hospice and Palliative Care Hospice Palliative Care

25 Philosophy and Principles of Hospice and Palliative Care Philosophy of care Goals of care

26 Palliative Care Curative Focus: Disease-specific Treatments Palliative Focus: Comfort/Supportive Treatments Bereavement Support

27 General Principles of Palliative Care Patient and family as unit of care Attention to physical, psychological, social and spiritual needs Interdisciplinary team approach

28 General Principles Education and support of patient and family Extends across illnesses and settings Bereavement Support

29 Model of Quality of Life Physical Well Being Psychological Well Being Social Well Being Spiritual Well Being

30 Physical Well Being Pain Multiple other symptoms Impact on family caregivers

31 Psychological Well Being Wide range of emotions and concerns Meaning of illness Depression Coping Cognitive assessment

32 Social Well Being Relationship/role description Caregiver burden Sexuality concerns Impact on children Financial concerns

33 Spiritual Well Being Religion and spirituality Seeking meaning Hope vs. despair Importance of ritual

34 Opportunities for Growth The last phase of life provides continued opportunities for positive growth in the face of suffering

35 Life Closure: A Personal Experience Completion with worldly affairs Completion of community relationships Meaning about one s individual life Love of self Love of others

36 Life Closure: A Personal Experience Completion of family/friend relationships Acceptance of the finality of life New self beyond personal loss Meaning about life Surrender to the unknown Letting go

37 Improving End of Life Care Some things cannot be fixed - Use of therapeutic presence Maintaining a realistic perspective

38 Conclusion Quality end of life care addresses Quality of Life concerns Increased Nursing knowledge is essential Being with Importance of interdisciplinary approach to care

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