Using Disease Trajectories to Guide Social work Practice with Chronically Ill patients and Their Caregivers. Christina Kulp, LCSW, ACHP-SW

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1 Using Disease Trajectories to Guide Social work Practice with Chronically Ill patients and Their Caregivers Christina Kulp, LCSW, ACHP-SW

2 Presenter Biography Christina Kulp, LCSW, ACHP-SW Medical Hospice Social Worker Christina is a Master s level graduate of Marywood University School of Social Work and has worked in the geriatric, non-profit and healthcare fields for over 17 years. She is licensed as a Clinical Social Worker in the state of PA. Christina also has postgraduate certificates in Gerontology, and Palliative/End of Life Care. She is specially certified in Advanced Hospice and Palliative Social Work through NASW. She has an ongoing interest in quality/process improvement, education and program development. She was deeply involved in the formation of the award-winning OACIS service at Lehigh Valley Health Network. She is a firm believer in the team approach to palliative and end of life care which provides the best possible services to patients and their loved ones. Christina enjoys supervising student social workers as the students often offer fresh perspectives and it provides an opportunity to shape the future of medical social work.

3 Learning Objectives The participant will be able to identify the three common disease trajectories in chronically ill patients. The participant will be able to apply interventions related to anticipated needs based upon disease trajectory. The participant will be able to demonstrate how knowledge of disease trajectory impacts the kind of psychosocial support given for patients and caregivers.

4 The Continuum of Chronic Illness

5 Palliative Care WHO Definition of Palliative Care 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.

6 Hospice National Hospice and Palliative Care Organization Definition: Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. Medicare Definition: A special way of caring for people who are terminally ill. Hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional, and spiritual needs of the patient. Hospice also provides support to the patient's family or caregiver.

7 Palliative Care vs. Hospice The Differences

8 Palliative Care vs. Hospice The Similarities Both strive to provide psychosocial, physical and spiritual support. Both provide a team approach to care Both apply to illnesses which are known to shorten life expectancy Both deal with anticipated trajectories related to illness

9 Huh? Illness Trajectories? Glaser and Straus developed 3 death trajectories during their groundbreaking research in the 1960 s. Sudden Death Natural Death Other Chronic Illness Why? To help physicians with prognostication for seriously ill patients.

10 Trajectories (continued) In 2002, using information from Medicare data, June Lunney, et all, suggested 4 illness trajectories. Sudden Death Terminal Illness Organ Failure Frailty For the purpose of this presentation we will acknowledge Lunney s Organ Failure and Frailty within Glaser and Straus Other Chronic Illness grouping.

11 Trajectory 1: Sudden Death Sudden death within the context of chronic illness

12 Trajectory 2: Natural Death Steady decline w/expected death no matter what treatments offered

13 Trajectory 3: Other Chronic Illness Steady decline with intermittent crises and unpredictable death point

14 Interventions Related to Trajectory

15 Trajectory 1: Sudden Death Priority education and formulation of Advance Directive Power of Attorney Funeral planning Education about potential of SD Remember this is in the context of Chronic Illness

16 Trajectory 2: Natural Death Education related to Advance Directives, POA, Funeral Planning Educate related to physical decline Care location home, ALF, SNF Equipment oxygen, hospital bed, functional aids Caregivers family, privately paid, community resources Educate related to potential cognitive decline Increased sleepiness Increased confusion Changes in temperament/behaviors

17 Trajectory 3: Other Chronic Illness All of Trajectory 2 interventions Prepare caregiver for frequent crises related to the chronic illness Discuss decreasing baseline function Encourage patient/caregivers to identify a tentative line in the sand

18 Psychosocial Support Tailored to Trajectory It s All About Timing Review Signs/Symptoms of dying Gone From My Sight Visit frequency related to disease progression Impacts the speed of delivery/visits Where to start beginning, middle or fast forward to the end Preparation promotes adaptation

19 Where in the Journey is the Patient?

20 Strengths Encourages patient and caregiver autonomy in the medical environment Allows team to address needs related to specific disease process Provides a more individualized approach patient care needs Provides insight to questions family may have which they may not be able to verbalize. Recognizes uncertainty and works to provide a variety of planning to cover anticipated scenarios Encourages patient and caregiver to identify values and open lines of communication

21 Weaknesses Potential to overgeneralize based on disease process and not individual Potential to provide more information patient or caregiver than they feel they can handle Potential to increase stress and feelings of being overwhelmed

22 -quote by Eugene Bell, Jr.

THE POWER OF STORYTELLING AT END OF LIFE WITH PATIENTS AND CAREGIVERS. Christina Kulp, LCSW

THE POWER OF STORYTELLING AT END OF LIFE WITH PATIENTS AND CAREGIVERS Christina Kulp, LCSW 1 PRESENTER BIOGRAPHY Christina Kulp, LCSW Medical Hospice Social Worker Christina is a graduate of Marywood University