In a hospital a fragile geriatric patient dies with multiple cronic diseases
Antonio dies at the age of 88 during one of his many hospital admissions and the primary care team closes the case with the following diagnosis: a) Parkinson 7 years of evolution, b) Heart failure due to valvular dilated cardiomyopathy, c) high blood pressure, d) cardiac arterial arrhythmia by fibrillation that required pacesetter e) depressive-anxious syndrome, f) frequent urinary tract infections, and e) progressive protein-calorie malnutrition leading to death.
The daughter needed her father’s small amount of money therefore she didn’t want to send him to a residence for the elderly.
In the two years preceding the death, Antonio showed an absolute dependence in activities of daily life with a Barthel zero. He lived with a divorced daughter who had no income, and with his two grandchildren, her children. The dependency aid (destined for the caregiver not for the professional) and Antonio’s small pension were the biggest family’s sources of income so this was always an impediment on the proposed admission to a nursing home; although it was clear that the daughter, even with little support from the municipal home help, could not meet the needs for long term attention in the period towards of Antonio’s end of life.
In the last 3 years of life, this patient had consumed more than 100,000 Euros in services, with an impressive degree of incoordination.
In Antonio’s case history for the three years prior to the hospital admission when he died, the primary care team counted 24 attendances to the emergency room of the hospital, for very different reasons, many of them linked to heart disease, but also due to falls, fever, depression, pain in the penis, etc. Of these visits, 15 did not result in hospitalization, but, instead, almost all required attention in the short stay unit or follow-up day hospital or an outpatient clinic. Nine hospitalizations (three per year) were made in Cardiology, Internal Medicine and Geriatrics, with a total of 77 stays. Nine interventions of social work at the hospital were also counted. The activity that Antonio has generated in the primary health care and at the municipal social services has not been recorded, but there’s no doubt that it was also plentiful.
The health and social spending in Antonio’s last three years of life must have been no less than 100,000 Euros (estimated figure), while his daughter’s experience of the process has been dismay and neglect. As for Antonio, we don’t know, but we can be fairly sure he must have felt misunderstood in each of the many visits to a huge number of professionals, whom he had to explain his history, his needs and desolation which nobody really listened, nor, of course, solved.
So far, this was a story based on real events. Now let’s imagine, only for educational purposes, that in those three years before his death, a multidisciplinary team developed and applied a Joint Individualized Care Plan (JICP) for Antonio (see Patient Centred Coordination, a CCM evolution).
A primary nurse should have been a referee, along with the social worker from the council. The two professionals should have submitted the case to the socio-clinic session, to which the family doctor, the cardiologist and the geriatrician would have attended along with the two professional referees.
- It should have assessed whether the home care program could have controlled (and prevented) Antonio’s most common symptoms, especially those due to heart failure.
- The nurse referee should have provided training to the daughter with regards to a healthy diet, adequate hydration and adherence to treatment.
- Antonio's daughter would have had to have a phone reference for a primary care alternative to ambulance.
- The question of the absolute lack of autonomy in Antonio’s daily activities would have been, probably, the biggest problem for his JICP. How to solve it? I think it should be assessed whether the daughter’s dedication, with the addition of hours of the home help service was sufficient. We should not discard that an organizational coaching could have improved the two women’s effectiveness; or perhaps not, and what was really necessary was to get more hours of "working hands". This workload assessment would have been very important for the JICP. If the problem was "more hands", they would have had to consider all the possibilities: a) one of the grandchildren was elderly and did not study, b) in the parish, there was a group of women who actively practiced charity c) a survey in the immediate family would have had to be undertaken; etc.
- In a JICP with these features, we ought to always keep in an eye on the caregiver’s qualities: what are her values, character, motivations for being a caregiver, etc. In these points may lay the difference between a good JICP and one that is not working.
To combat failures of coordination as unfortunate as Antonio’s there is only one right path to take (at least one I can think of): the community social work team and the primary care team, supported by hospital specialists, should provide the therapeutic plan that best suits the circumstances of each patient, and the service buyer must collaborate to make the financing of each of these individualized plans, feasible. The resources are there, but sadly, far from where they are needed.