A Good Death, A Reflection on Ombudsman Complaints about End of Life Care in Irish Hospitals Bernie McNally. Director General, Office of the Ombudsman and Information Commissioner

1. A Good Death...
A Reflection on Ombudsman Complaints about End of Life Care in Irish Hospitals
Bernadette McNally
Director General
Office of the Ombudsman

2. The Ombudsman’s role
Investigate complaints
Seek redress where complaint upheld
Facilitate change / improvement

3. Is negative feedback a bad thing???
•The Positivity Ratio
(positive events to negative)
•< 2:1 languishing
• 5:1 flourishing
•> 11:1 a problem !!??
•We all need constructive confrontation of problems and bad behaviours

4. The Mid Staffordshire scandal:- Could it happen here?

5. Mid Staffordshire Inquiry
appalling suffering of many patients
did not listen sufficiently to its patients or staff or ensure action
failed to tackle an insidious negative culture
disengagement from managerial and leadership responsibilities
ascribed more weight to positive information than to concerns
a culture of habituation and passivity
a striking absence of empathy

6. How did Mid Staff respond to complaints
•64 serious complaints: all ignored
•The Board lacked an awareness of the reality of care being provided to patients
•Did not respond to warning signs indicating poor care because it gave complaints too little weight
•Failures could be due to inattention, but more likely to be the lack of importance accorded to this information

7. Heard in evidence 378 times
“with the benefit of hindsight”

8. Top Complaints to Irish Ombudsman re Healthcare
Care of the Dying
Assistance with feeding
Toileting and continence
Falls, Seating & Pressure Mgt
Hygiene
Drug Administration
Treatment of family members
Communication
Behaviour of staff
Access to medical care
Staffing levels
Access to Therapies
DNR and other
Record keeping
Complaint handling
Discharge planning

10. Colin A son’s death and lessons learned
The Complaint
Regime of anti-biotic Tx
Poor communication
Poor record keeping
No info on side effects and risks
Dehydration and under- nourishment
Inadequacy of medical care (frequency and competence)
No cover for Consultant
The outcome
Training on Adv. Drug Reactions
Better communication
Better record keeping
Appt of 2nd Congen. Heart Nurse
Policy on the clinical handover of patients from one team to another
10

11. What my Office seeks...
High standards
Where failings occur, -manage the complaint locally: -acknowledge the failings, -apologise (meaningfully)
-provide assurances re improvements
If complaint escalates to us, cooperate fully, and in a timely manner
Learn and Lead

12. A collection of stories and experiences. What can we learn from them?

13. DNR
Older woman cared for “poorly” in hospital
Family complained and sought medical records
Family had agreed to DNR, but was not aware of “ comfort measures only”
Family believed it had caused death by medication etc. being withdrawn
Learning:- Better communication, explanations, responsibility of consultant, copies of relevant policy

14. Breaking bad news
87 yr old woman told she was dying of cancer
No family member or nurse present
(Family had asked Reg. not to give bad news)
Learning
Policy on breaking bad news ( how, when, who...)
Give it time
Respect wishes of patient, be aware of family concerns,

15. Supporting a good death at home
85 year old woman discharged home 6 days before death
No visit from PHN for first 5 days (no referral)
Pain relieving meds not available for first 24 hrs
No advice on care
Learning
Actively plan and support the d/c and logistics
Activate community resources

16. Duty to family?
Information.... Patient’s rights versus family regrets
Space to grieve
Offering condolences
Patience and tact
Arranging post mortems
The remains
The mortuary

17. Managing complaints
Complaints re care before or after death are sometimes the most complex and time consuming.
Give them time early on.
Offer a non-threatening meeting, perhaps with an advocate present.
Listen. Work hard not to be defensive
Where there is learning, show strength in pursuing it

18. "I wanted to thank you for everything you have done over the last few years.
If it wasn't for you I would still be living uncertain of what happened, with myself and my kids re-living every thing that happened for the rest of our lives.
Every day was an emotional roller coaster.
It is like a dark cloud has been lifted. Its finally over and I can enjoy my life. I have some issues still to deal with as a result of what I went through but this is the start of my next chapter".
Complainant to complaint investigator

19. Thank you
www.ombudsman.gov.ie
Lo-call: 1890 223030
Ombudsman@ombudsman.gov.ie
and also see www.