I’ve been thinking about continuity of care. The advantage of continuity of care was taken for granted in traditional, community based general practice where the family doctor got to know people, in their own context, over time. Seeing the same doctor repeatedly offers significant measurable benefits, including greater patient satisfaction, lower use of acute and out of hours services and reduced patient mortality as well as better job satisfaction and retention of those doctors. A dose-response relationship between continuity of patient care and improved patient outcomes suggests that associations are causal. Professor Martin Marshall, chair of the Royal College of General Practitioners is quoted as asserting that: “If relationships were a drug, guideline developers would mandate their use.”
I recently broke my tibia. A broken bone has long been treatable by bone-setters and surgeons and a cleanly broken bone can be a straight-forward medical problem, providing existential horror doesn’t set in (see Oliver Sacks’ book A Leg To Stand On). But in modern healthcare systems, getting access to any healthcare, even straight-forward bone-setting, requires significant negotiation and not much continuity of care. As I have discovered, surgery, pain relief, wound care, walking aids and rehab all have to be actively extracted. This negotiation has brought me into contact with 40-plus individual healthcare staff and I have not yet met with the same person more than once.
My local healthcare system (which happens to be in Sweden), is relatively well funded through the tax payers, but is, nonetheless, suffering from staff shortages. In my case, this meant that the surgery required to bolt my bones back together was initially cancelled.
On the day of the accident, when I arrived at the Emergency Department the tired-looking receptionist said that, while I could wait for an assessment, it would be advisable to attend a minor injuries unit on the other side of town, to reduce my waiting time by 4 hours. On the other side of town, the X-ray was taken, the need for surgery to allow the bones to heal explained and a prescription for pain-killers issued. Three days later, I was taken to the pre-operative department of the teaching hospital, having, as is the norm in Sweden, taken two showers with anti-bacterial scrub, in preparation for surgery. After a couple of hours of waiting around in a backless gown, the surgeon came to tell me that staff shortages meant an operating theatre was being closed. The following week I returned and (heavens-be-praised), got my knee fixed. During an overnight stay, I had exchanges (in various states of coherence) with thirty-odd hospital staff.
Sweden has a web-based central national infrastructure called 1177 that structures access to healthcare professionals. Through this online service, my digital case notes have been seen and annotated by 20 named healthcare professionals, including orthopaedic surgeons, anaesthetists, occupational therapists, physiotherapists, nurses and auxiliary nurses. Staff from the teaching hospital, minor injuries unit, municipal occupational therapy, primary care centre all use the 1177-site as the platform for communicating with the patient. Patients log into the site with a two-factor authentication and can (with a willingness to navigate round various headings and menus) write requests to healthcare staff.
So, in brief, my fractured tibia has brought me into contact with dozens and dozens of different healthcare professionals, all of whom have contributed to fixing my knee.
Lucky me to have access to such multi-disciplinary expertise!
The web-based system is a useful way of collating information for staff and for patients. It is also a strong mechanism for rationing patients’ access to healthcare. Back home after surgery, when the bandage was falling off and the pain killers had run out, persistence and digital acuity was needed to get help. I sent messages via the 1177 system and was referred by the orthopedics department to primary care and then back again. Eventually a kindly physiotherapist took pity on me. A request for pain killers was lodged, but not forthcoming because, as I was told via a message, doctors have a 5-day window within which to sign repeat prescriptions. Needless to say, post-operative pain does not recognise this 5-day period of grace.
Once dosed with paracetamol and dolcontin again, I’ve been catching up on reading and cogitating over the mediated and discontinuous nature of the healthcare I’ve experienced. Top of my bedside pile of books – the acclaimed 2014 memoir by neurosurgeon Henry Marsh; Do No Harm.
When Marsh broke a leg falling down stairs, he describes prompt and expert care followed by five days of recuperation at a private hospital where professionals’ voices were ‘full of charm and polite encouragement’. He rapidly returns to an active life, with no mention of rehab or existential uncertainty. Marsh has the wit to reflect on how his experience of rapid and focused care differs from what his own NHS patients receive. The distance between doctors (and especially surgeons) and their patients is one of his ongoing preoccupations. Marsh sees the need for surgeons to distance themselves from both patients and suffering, in order to operate. But this distancing is troubled when the surgeon himself becomes a patient.
In his subsequent volume of memoir, Henry Marsh ponders his own transformation from neurosurgeon to patient following a diagnosis of prostate cancer: competent surgery requires detachment from suffering, but at the cost of compassion. Marsh considers his own distancing from his patients and the ease with which surgeons in general can disengage from patients that have poor outcomes. By chance, Marsh visits a care home, where a former patient is living out his life in a semi-conscious state. Marsh reflects that despite trying to remember his failed operations alongside the successes, he had totally forgotten this particular patient. What would happen to pioneering and experimental surgical practice if the surgeons remained responsible for the care of those who had catastrophically poor outcomes? If such radical continuity of care was introduced, would patient-defined quality of life be more likely to govern clinical decision-making?
Hospital care, and especially acute care, has characteristically sacrificed continuity of care for prompt professional attention from a shift-based work-force. With peritonitis or a stab wound, speedy care is the priority. But after the initial stabilization of the acute trauma is achieved, recovery is best supported by sustained relationships with a stable group of staff, whatever the nature of the original trauma. Rota-based working disrupts continuity of care but delivers prompt attention. However, if shift working doesn’t offer prompt attention, then the discontinuity of care becomes an additional disbenefit, rather than a price worth paying.
Providing good quality continuous care in primary care in England, let alone in other areas of healthcare, under the current climate, is near-impossible according to disillusioned staff. Henry Marsh admitted to operating against his clinical judgement as a way of giving hope to patients with fatal diagnoses.
An important question for the development of humane and equitable health services is how best to sustain hope. Continuity of care, delivered by trusted professionals who choose to remain in employment long-term, should be a strong contender for priority funding.