A relative born in 1932 lives in poor health. Unable to stand or move unaided she needs increasing care and attendance. A few months back she was relatively independent, living alone with a package of care that consisted of four short daily visits from highly supportive and caring staff. Over the summer this has changed dramatically and her needs now are much increased. She is fortunate to have a daughter close-by. This daughter has more or less left her own home and her family commitments and moved into her mother’s home.
Pleas for additional support are unactioned as her key social worker awaits a care assessment; scheduled but as yet uncompleted. The family are stoical and uncomplaining and recognize their responsibilities for their frail elderly mother who in spite of the ravages of age retains a quiet dignity that she struggles to preserve. Yet these recognized responsibilities a marred by a lack of competence to provide the required level of care and support and a knowledge of what support is really out there. The family are happy to pay privately for support but that option is, they are told, not available and where she is on a care-home list that will be some time in the future due to a waiting list.
Her failing health is accompanied by frequent acute medical events. She has suffered repeated and serious kidney infections over recent months due to chronic kidney disease. These manifest in such severe symptoms that she was hospitalized three times since July. Each visit is the same. An ambulance is called and she is transferred to the Emergency Department (ED) of the local area hospital. Her daughter accompanies and the patient remains on a chair/trolly for 3 to 4 days only being transferred to a ward on day 4 or 5 days and then discharged on day 5 to 7. Being in ED particularly at a weekend, is not for the faint hearted. Sitting on a chair in a crowded corner by a nursing station with one or two very disruptive and belligerent patients, makes for a very long, uncomfortable and sleepless night. Difficult enough when you are well; frightening and agonising when you are seriously ill.
Once admitted to a ward the family are more reassured but then they are told that the Acute Medical Unit has resolved her clinical needs and since there is nothing more they can do medically she is discharged. The family were hoping for a care facility for a period of respite and recovery but an abrupt discharge happens when an unsuspecting family member visits and on two occasions, she was lifted into a car by hospital staff to be driven home without her package of care being restarted. The key objective of Acute Medical Units it seems is to effect discharges above any other priority. There must be a more humane way to treat frail elderly patients.
Back in the bosom of a confused family they struggle to address her increased needs. The experience at ED on each of these three occasions was so dreadful and shocking that the family, in agreement with their mother, have decided never to return.
A week later, symptoms return and getting out of bed at 6.00 am and supported by her daughter the mother slips and falls onto the carpet. The daughter unable to lift her, calls over other family members and finally she is put back into bed. This event is causally related to care staff who arrive at 9.00 am. Before doing anything, they report the incident and are told to stop all care until an X-ray confirms no broken bones. They leave. The GP is phoned but insists on an attendance at ED or an Acute Care facility. She can’t help. The family attempt to book an appointment at an Acute Care facility but require an ambulance. A more assertive family member asks that the triage nurse simply confirms an X-ray unnecessary given the context of the slip. She cannot; the only person is the GP. So, the GP is phoned and when finally contacted, says that without an examination she can’t make a call on it. The family are firm; their mother is going nowhere. Within an hour a young GP is at the family home, has completed a thorough examination and is satisfied nothing has been broken. The care package is resumed.
That afternoon a nurse arrives to take bloods requested as a following up to her last ED visit. Next morning the GP telephones; based on the blood tests she is in kidney failure and needs to go to ED urgently. The daughter refuses, the GP insists and after a Mexican standoff the GP arranges for Hospital at Home to visit. Within a few hours a drip is set up and over the weekend a blood test indicates all is back to normal and the patient is much improved.
The family are off course delighted with the Hospital at Home service yet wonder why this was not offered before. It is the exception but should be the standard for elderly acute care.
This is sadly not an isolated story. The service is unresponsive to patients’ needs rather it supports the system itself which creates extreme inefficiencies and defensive medicine is core to this inefficiency. No one seems willing to make a decision to help a patient rather decisions seem focused on protecting the service and vicariously the staff. I understand this and we all share responsibility for creating this culture. We are much too quick to blame the service and take action against practitioners when things go wrong. Off course there is medical malpractice where individuals and departments fail to perform to an acceptable standard resulting in patient harm and these frequently result in compensation that drains the service of much needed cash.
We need to move to a no-fault compensation system such as in New Zealand where patients and families generally cannot sue the health service for medical negligence. Instead of litigation, patients are eligible to claim government-funded compensation through the Accident Compensation Corporation (ACC) for injuries arising from healthcare. You can also lodge a formal complaint with the relevant health authority or professional body for perceived wrongdoing and bring individuals to account for their poor performance.
A no fault compensation scheme here would provide the necessary checks and balances in the system and ensure patient focused care, a reduction in bureaucratic service provision and a stop to service draining compensation claims. We might then be able to afford the much wished for transformation.
A bit late perhaps for this elderly relative. She will die in the near future and I can only hope that she is afforded the dignity that she deserves in this the last stage of her long life.
I am a pharmacist in Belfast.
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