The challenges of care for the long-term dialysis patient

1. The challenges of care for the long-term dialysis patient Chris Pritchard Renal Social Worker Ysbyty Gwynedd Hospital Bangor

2. For many staff ,the attraction of working in the renal services presupposes,that they will have the opportunity,not only to sustain life ,but to enhance the quality of life for patients

3. The Long-Term Dialysis Patient ; Definition • A patient who has had considerable experience of • dialysis. • A patient for whom the prospect of transplantation • is remote or non- existent.. • A patient who understands that they will require • dialysis for life.

4. “The progess of chronic haemodialysis has brought up new and intriguing psychological problems (for the Renal team) which are not only of theoretical interest but also of daily importance,since responses to those problems can affect the course, if not the outcome of treatment” Kaplan-De-Nour The Lancet, November 1968

5. RENAL (Health Beliefs) DISEASE PATIENT (Social Context) Perception of Illness Perception of Problems Adaptive? Coping Strategies Maladaptive? RESPONSES (Adapted from J. Weinman 1987)

6. Quality of Life Factors : • Objective Measures • HEALTH STATUS • FUNCTIONAL ABILITY • PERSONALITY/ AFFECT • SOCIAL ROLE/ SOCIAL SUPPORT SYSTEM • Subjective Measures • LIFE SATISFACTION • HAPPINESS • ACCEPTANCE • ADJUSTMENT

7. “Quality of life needs to be defined in terms of a patient's unique experience of life” (Including illness perceptions) Ferrans 1996

8. Case Study 1 An 87 year old man, who after 8 years on haemodialysis needed to accept that he could no longer live independently and care for severely, disabled wife Quality of Life Factors Health Status ? Functional Ability ? Personality / Affect ? Social Role / Support ? RESPONSES DEPRESSION DENIAL OUTCOME Acceptance of dependency needs and the provision of good care

9. Case Study 2 A 40 year old woman, on haemodialysis for 10 years, with a history of a failed transplant,whose deteriorating health and response to it caused increasing concern Quality of Life Factors Health Status ? Functional Ability ? Personality / Affect ? Social Role ? RESPONSES DEPRESSION / WITHDRAWAL ANGER NEED for CONTROL OUTCOME Negotiation and partnership Empowerment and self-care

10. Case Study 3 A 62 year old widow ,on haemodialysis for a 4 years, who suffered a physical injury and decided to withdraw from the traetment program • Quality of Life Factors • Health Status ? • Functional Ability ? • Personality / Affect ? • Social Role /Support ? • RESPONSES ANXIETY • OBSESSIONAL BEHAVIOUR • WITHDRAWAL OUTCOME Patient made an informed decision to end her life based on her own assessment of her perceived quality of life

11. Coping Strategies for Renal Teams : • Being aware of the " Renal Double Bind". • Understanding responses to Chronic health problems. • Anticipating "stages'' in a patient's career. • Developing good communication skills. • Being aware of stess and attending to self-care. • Recognising the need for support / team-work. • Allowing patient empowerment and partnership. • Accepting the importance of good psycho/social care

12. Re-examine the premise that life can be prolonged and the quality of life improved • When this is no longer possible, the challenge may be in providing good quality care for the long- term dialysis patient " Life is what happens to you while you are busy making other plans." The late John Lennon `