Discharges from Hospital - Case Studies of People with Intellectual Disability

Discharging patients from hospital can resemble a family packing the car for a holiday - everyone working together under a leader, for one purpose, which often takes longer than expected and involves some last minute dashes back to the house for forgotten items. A satisfactory discharge is based on the need to avoid unplanned re-admission in order to improve the quality of life of the patient and the financial impacts on the health system.

The term ‘discharge’ is also referred to as ‘transfer of care’¹ as patient’s health care continues to be supported by the general practitioner (GP), community health providers, other organisation or by the patient and/or their carer.

NSW Health¹ describes five stages of care coordination*. While the five stages will apply to most patients having an inpatient stay, the stages can be adapted for particular patient groups.

Contents

• Summary of Findings
• Case Studies
  • Dan - Dan is 19 years old. His family speaks a language other than English at home and he has intellectual disability. He is non-verbal. He was discharged from hospital following planned orthopaedic surgery and the insertion of a gastrostomy for feeding and medications. His family picked him up from the hospital to take him to his supported accommodation.
  • Joe - Joe is 40 years old, lives in disability supported accommodation with access to clinical support. He had a planned hip replacement. He is mobile and has moderate intellectual disability.
  • Simon - Simon is a 14 year old boy who attends a mainstream school. He has intellectual disability and had planned orthopaedic surgery three years ago. He lives in a regional area of NSW and is cared for by his father. He was discharged from hospital three years ago with a wheelchair and crutches and follow-up referrals and occupational therapy appointments regarding equipment. No follow up appointments were attended.
  • Jenny - Jenny is 17 years old, lives between her single mother and supported accommodation and has a severe intellectual disability. She also has a mental illness and challenging behaviour. Department of Families and Community has at times been involved in her care arrangements and child protection concerns. Jenny’s mother has another child who is preschool age.
  • Jay - Jay is a 21 year old male who lives in rural NSW. He has mild intellectual disability, is non-verbal and needs assistance with all activities of daily living. He is cared for at home by his grandmother.
  • Derryk - Derryk is an eleven year old boy with Attention Deficit Hyperactivity Disorder and intellectual disability. He is in foster care and attends a special school. He lives in a regional area of NSW.
  • Drew - Drew is a 26 year old indigenous male with intellectual disability and cerebral palsy who lives with his parents in rural NSW. He has a naso-gastric tube in situ for formula and medication.
  • Russ - Russ is a 69 year old male who has lived in the same supported accommodation since he was 15. He has a moderate intellectual disability, and is non-verbal. He has been managed by medical and nursing staff employed by the disability service Non Government Organisation. He had private health insurance. He has had declining health, but has continued to work in an employment program, and did not want to retire. He had a stroke and was transferred to hospital by ambulance.
  • Pat - Pat is a 34 year old male with mild intellectual disability. He has had several unplanned admissions to hospital recently and a recent complicated discharge home to a family situation needing additional support.
  • Mary - Mary is a 65 year old lady living in government disability supported accommodation in Sydney. She has intellectual disability and co-morbid complex mental health issues.
• Questions
• Background
• References

Summary of Findings

1. Identified Priorities

• Communication between the person with ID and between the carer / family and other organisations
• Interagency partnerships
• Role of family / carer
• Staff capacity to care for people with intellectual disability
• Case conferencing and timely discharge planning
• Health staff understanding of the supported accommodation model of care
• Local Health District key contact for people with intellectual disability
• The need for policy to guide practice
  • NSW Health & Ageing and Disability and Home Care (ADHC) Joint Guideline (2013)
  • Disability - People with a Disability: Responding to Needs During Hospitalisation (PD2017_001)
• The impact of appropriate support and accommodation on unplanned hospital admission and length of stay for people with intellectual disability.

2. Factors which assisted the discharge process from the 10 Discharge Case Studies

• Discharge discussion involving GP and other key supports with person with intellectual disability at centre of care.
• Team leader from supported accommodation with clinical skills/knowledge
• Written discharge information which is understood by relevant person, and which is sent to GP.
• Appropriate discharge education (and the opportunity for supervised practise)
• Importance of the Joint Guidelines as basis for collaboration and planning
• Risk profile identification at GP level, or at hospital pre-admission meeting
• Discharge journey beginning at admission
• Health staff understanding the skills of support staff and the model of care in supported accommodation. Many assumed it was like an aged care environment where clinical staff are available.
• Health literature and discharge information in written and verbal form, and reviewed with the person with ID (and their support network with consent).

Current changes to health services allow for the opportunity to assess the need for roles such as discharge planning, case co-ordination and community care co-ordination.

The ten de-identifisd discharge stories in this collection formed the basis of the discussion which informed this work.

General Discussion Questions for Discharge Case Studies

Some useful questions to consider when reading the stories or using them in a learning environment are:

1. What evidence is there of effective communication ?
2. What are the important partnerships in this discharge process? Are there any others which would have assisted the process?
3. Who are the key people involved and what have they contributed to the discharge process? Are there are key players missing?
4. What evidence is there of the centrality of the patient in the process?
5. How has the discharge process responded to the needs of the patient’s intellectual disability? What additional adjustments might have assisted here?
6. What has impacted the patient’s length of stay in hospital? How has this impacted:
   1. the patient’s quality of life
   2. the health system?
7. What current health policy supports this discharge process?

Background

A working group of the Intellectual Disability (ID) Health Network, met from January 2013 to March 2014, to discuss ten de-identified situations around discharge of a patient with intellectual disability from a public hospital in NSW, usually to supported accommodation.  This aim was to understand the current delivery of health services for people with intellectual disability in NSW and how partnerships support the process.

Multidisciplinary representatives of paediatric and adult health services (metropolitan, regional and rural NSW), disability services, mental health and specialist ID Health services, as well as a carer and advocate were members of this working group.

It is hoped these case studies and discussion will be used as a teaching tool and to assist in the development of policies and procedures inclusive of people with ID as they are discharged from hospital to the community, and to supported accommodation in particular.  The insights and identified priorities are useful for health at every level (acute, primary and community, specialist and population health), but also for other agencies and service providers who work in partnership with people with intellectual disability on their journey through health services.  Health and welfare education at graduate and undergraduate level, especially when focused on transitioning of care and people with intellectual disability, would benefit from considering these discharge stories.

Good outcomes for patient and hospital require patient–centred discharge planning from pre-admission, collaboration and the ability to make reasonable adjustments.

The Australian Government Department of Health and Ageing

In March 2013 the Australian Government Department of Health and Ageing published the Patient safety – handover of care between primary and acute care: Policy review and analysis. It lists the impact of problems identified at the interface of acute / primary health care. Outcomes of transitional care strategies are often affected by non-clinical issues. Although there is no specific mention of intellectual disability, there is mention of targeted vulnerable populations and issues and recommendations, are consistent with issues identified for people with intellectual disability. Research on chronic disease management packages shows the use of Medicare Benefits Scheme (MBS) items specifically for discharge planning and case conferencing are not well utilised and that financial incentives for discharge planning and other related tasks, though useful, should not be relied upon as a sole strategy for behavioural and cultural change.

In the Context of Disability Reform

Within NSW, as large residential centres are devolved across NSW, people with intellectual disability living in non-government organisation (NGO) operated supported accommodation in the community will form new partnerships to access health services. The identified priorities will remain as key features of discharge from hospital.

References

1. NSW Health. PD 2005_092 Principles of Discharge Planning 25 Jan-2005; NSW Health. 2011. Care Coordination: Planning from Admission of Care in NSW Public Hospitals (PD2011_15).
2. Australian Commission on Safety and Quality in Health Care. 2014. Health Literacy Taking Action to Improve Safety and Quality. pg. 13 accessed 26/9/2014.
3. National Patient Safety Foundation. USA.

Footnote

* 1. Pre Admission/Admission, 2. Multidisciplinary Team Review, 3. Estimated Date of Discharge (EDD), 4. Referrals and Liaison for patient transfer of care, 5. Transfer of care out of the hospital.