Patients with advanced co-existing illnesses struggle to get appropriate healthcare

An analysis of feedback provided by patients and carers suggests that patients with co-existing illnesses struggle to cope with a bewildering array of services and treatments, and that these are often poorly coordinated and lack any continuity of care. Patients and carers frequently found that accessing the support they needed was a challenge.


This is important as 'multi-morbidity,' where patients are coping with several illnesses at the same time, is increasingly common in the last year of life, and associated with frequent hospital admissions.

The analysis involved 87 semi structured interviews with 37 patients considered to be in the last year of their life from an acute admissions unit in a Scottish regional hospital; a large general practice in England; a respiratory diseases outpatient clinic in London; and 17 family carers.

The interviews took place at 8-12 weekly intervals over a period of five to nine months, in a bid to gauge interviewees' understanding of their various conditions, and their experience of care in different services and environments.

The patients were aged between 55 and 92, and 23 of them were men. They had several illnesses, including: heart, respiratory, liver and kidney failure; lung cancer; neurological conditions; and mild dementia.

Their feedback reflected an ongoing struggle to cope with several different care systems, services, and staff.

The interviewees described complicated, confusing and, at times, unresponsive services, and the lack of coordination and continuity of care led them to perceive care as inconsistent and impersonal.

No single diagnosis and difficulty explaining their health problems made requesting surgery appointments or GP visits hard, while getting to a clinic was physically demanding for them.

Many of the patients were taking more than 10 different drugs every day, and frequent changes in medication were linked to hospital admissions, making them question the purpose and effectiveness of these changes.

Carers found themselves dealing with increasing physical and emotional demands without any idea of how long they would be required to fulfil this role.

There was little evidence of integrated care planning or any open discussion about the future among patients, family carers, or health professionals.

Patients and carers often coped by focusing on doing the best they could in the here and now, rather than thinking about death. Indeed, most patients put their failing health down to 'getting old,' rather than progressively deteriorating health. Some saw being independent and not having to ask for help or rely on services as important.

"We need a change of culture to encourage proactive care, while at the same time helping to maintain a sense of identity as a 'normal' old person," write the authors, who advocate a systematic approach to identifying patients with several advanced illnesses.

This would enable them to live well while planning for the inevitable future deterioration in their health, they suggest.

"More and more of us will face many years of living with multi-morbidity: the challenge is to make those years as healthy as possible," they conclude.

The research is published online in BMJ Supportive & Palliative Care.

Has a sudden onset. Full medical glossary
Abnormal, uncontrolled cell division resulting in a malignant tumour that may invade surrounding tissues or spread to distant parts of the body. Full medical glossary
The growth within a laboratory of microbes, organisms too small to be seen with the naked eye. Full medical glossary
Decline in mental capacity, brain functioning and memory that affects day-to-day living. Full medical glossary
The process of determining which condition a patient may have. Full medical glossary
The basic unit of genetic material carried on chromosomes. Full medical glossary
An organ with the ability to make and secrete certain fluids. Full medical glossary
An element present in haemoglobin in the red cells. Full medical glossary
One of two bean-shaped organs that are located on either side of the body, below the ribcage. The main role of the kidneys is to filter out waste products from the blood. Full medical glossary
A large abdominal organ that has many important roles including the production of bile and clotting factors, detoxification, and the metabolism of proteins, carbohydrates and fats. Full medical glossary

Associated with the nervous system and the brain.

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Continuously increasing in extent or severity. Full medical glossary
A tube placed inside a tubular structure in the body, to keep it patent, that is, open. Full medical glossary
Relating to the urinary tract. Full medical glossary