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Case report: A 60-year-old woman attended a general practitioner complaining of malaise, anorexia and weight loss. She was diagnosed as being anaemic (Hb 10 g/dl). Six months later she attended the doctor with an additional complaint of abdominal pain. An ultrasound was ordered and it showed a heterogeneous abdominal mass; further evaluation with contrast-enhanced CT was advised as soon as possible and was requested. The patient was advised the radiologist would be consulted and that she would be called to be given a date for the scan to be done.

Three months after the patient had complained of her abdominal pain the patient made another visit to the doctor who wrote a referral letter and addressed it to the 'On-call general surgery consultant'. The letter contained the results of blood tests showing elevated cancer screening levels and a note that a CT scan had been ordered. The records department gave an appointment for 4 months later.

One month before the scheduled outpatient appointment, the patient presented at the emergency department with worsening abdominal pain, shortness of breath and palpitations. The patient said she had lost 40 lbs. in weight and had a palpable abdominal mass, which was shown on a CT scan ordered in the emergency department to be invading the adjacent abdominal wall. She was admitted and underwent an urgent exploratory operation where multiple peritoneal deposits were also found. Her postoperative course was complicated by organ failure and she died a few days after her operation. When the hospital notes were reviewed for the surgery department audit, there was an outpatient clinic entry stating, "Not heard when called".

Issues raised

The early diagnosis of cancer

The treatment and possibility of curing a cancer depends in most instances on making an early diagnosis. This can either be done by screening programmes where appropriate, or by the physician recognizing the early symptoms of disease and carrying out the appropriate diagnostic measures.’ Since there are no cancers that are normally treated by a primary care physician, it is appropriate to ask what role should the primary care physician play in the diagnosis of cancers, or should the specialist physicians undertake that responsibility. Unless the organization of the system of care restricts direct access to specialist care, it is appropriate that both primary care physicians and specialists should be involved in the early diagnosis of cancers, and that there must be suitably responsive mechanisms for the investigation and referral of a patient into the specialist care systems.

In the report given the patient has presented to the primary care physician with symptoms that should lead to suspicion of a cancer diagnosis somewhere. No details of a physical examination are given, but given the patient’s age and the symptoms given, the patient should have been screened for a bowel cancer, an ovarian cancer, as well as breast cancer. In addition, the opportunity could have been taken to screen for general metabolic disease and via a chest x-ray for metastatic disease. It appears that the primary care physician has incorrectly attributed the symptoms to a mild anaemia and the patient had accepted this reassurance until new and more troublesome symptoms arose six months later.

The role of the primary care physician in investigating patients

A patient on attending a doctor would expect a diagnosis to be made, and where specialist treatment is required to be referred at the earliest possible opportunity. In order to make a diagnosis, the primary care physicians should be expected to have sufficient knowledge to initiate the correct diagnostic procedures, but should not see themself as responsible for initiating any additional investigations that may be required by the specialist physician for the treatment required.

The initiation by the primary care physician of investigations that are required by the specialist physician for treatment purposes are often repeated when there has been a waiting time for the specialist appointment. This can clearly be at a cost to the patient both in terms of radiation exposure, any risks of the procedure, and the cost to the patient or to the system of care whether it be a public or a private service. Thus it is appropriate that a primary care physician should order diagnostic/screening investigations such as mammograms or colonoscopy, but should refrain from ordering staging investigations such as MRI’s or CT scans unless they are done in consultation with the treating specialist. This however does not negate the wider role the primary care physician should play in the management of patients with cancer.

In the report given the primary care physician involved missed the opportunity of screening for common cancers at the initial consultation and an inappropriate assessment was made. On the second consultation, the investigations ordered were for the detection of advanced disease and indeed they indicated as much. The results and the patient’s complaint should have precipitated an urgent referral, what followed instead was a request for a staging investigation and a letter of referral through a non-urgent routing that resulted in a four months routine appointment.

The urgent referral

Catastrophic urgencies are dealt with in emergency departments and are prioritized there along with less catastrophic cases, in a triaging system. The less catastrophic urgency may be subject to delays in emergency departments that may vary from hours up to a day. This type of delay in emergency departments is exhausting for the patient and their relatives, but will not be usually as long as obtaining an appointment in a specialist clinic.

Obtaining an appointment in a specialist clinic depends on the system in place and is usually quicker to obtain in private rather than in public systems, where appointments may vary from weeks to many months. Therefore, systems have to be devised, particularly in public systems, to enable urgent referrals to be made to specialist clinics. Most systems of appointment depend on non-professional staff that are asked to deal with letters or phone calls from physicians or their assistants. Such staff usually have no special training or guidance as to when an urgent appointment should be given and inevitably depend on some direct guidance from the specialist concerned. It is therefore most appropriate that urgent requests be handled by some direct communication between the referring physician and the treating specialist. The most direct means of achieving this is via telephone contact and to a much lesser extent be email communication. Both of these means have their own difficulties, with telephone communication depending on the efficiency of the telephone system in public and specialist institutions, as well as the availability of both the referring physician and that of the specialist being referred to. Where the telephone systems result in frustration, letters delivered via the patient are often used. When letters are used for urgent appointments, there should be some prominent display of the URGENT nature of the request, and the narrative should reflect why the referring physician considers the matter urgent. The letter should be couched in such terms that the lay appointment staff might either agree with the judgment of urgency, or decide to seek guidance from the specialist physician.

Referral systems and particularly those dealing with urgencies should be subject to periodic audit and review and be modified as necessary. This should avoid patients falling through the cracks, and when treatment outcomes are not satisfactory to be able to avoid an indefensible legal claim.

In the report given the only evidence of urgency given is addressing the letter to ‘the on-call general surgeon’. There is no indication that the records staff seeks the advice of the ‘on-call general surgeon’ or discerns that the information contained in the letter requires an urgent appointment. It can only be considered as ironic that the records staff do not recognize that the patient has been admitted and died, and records that the patient did not keep the outpatients appointment by the notation ‘Not heard when called’. An enquiry of the surgical department revealed that there was a ten-year old guideline that the ‘on-call’ surgical staff should be responsible for reviewing any letters for urgent appointments and direct the records staff as to when the appointment should be given. However, the current senior resident surgical staff and the records department said they were unaware of any such written directive.

Ethical and legal responsibilities in delayed care

Professional staff carry both ethical and legal responsibility for breaches in the standard of care of the patient that result in avoidable harm. The administration of a clinic or an institution also carries legal responsibility for the role of their staff in breaches in the care of patients that result in compensable harm.

Delays in care may be brought about by the failure of staff to follow established guidelines for appointments and procedures; by the failure to maintain equipment leaving it unavailable in a timely manner; and the lack of or availability of written procedural guidelines for dealing with urgent referrals.

Delays in care can also be brought about by a failure to diagnose a patient’s condition, but such delays can only carry legal responsibility when such failure can be demonstrated to have been negligent. Such negligent care may be brought about by an inadequate history and examination, by a lack of investigation or follow-up when it was warranted.

In the report given, it is clear that the primary care physician carried some legal responsibility for a breach in the measures undertaken to come to a diagnosis on the symptoms given at the first presentation a year before the patient was finally admitted. The delay was further compounded by not seeking an urgent appointment via the telephone when there was little doubt about the diagnosis. Although the primary care physician could be criticized for seeking what is a specialist investigation before referral, there is the stark liability of a radiology department that fails to give an appointment for 6-months, but is capable of doing the same investigation as an emergency. This administrative negligence in the radiology department is mirrored by any sense of urgency in the records department dealing with appointments. The surgical department cannot be faulted for their response to this patient, but should accept that their system for dealing with urgent matters was unknown even within their own department, and could have contributed to the failure that occurred at the primary care physician level and in the records department for making appointments.

The responsibility of patients in referral systems

It is clearly in a patient/guardian’s interest to get involved in the care they receive and to consent to whatever is recommended to them. Therefore, when referrals are being made for investigation and/or care the patient /guardian must clearly understand what is expected or required of them. This knowledge/understanding must be imparted by the physician and feedback sought to ensure that the patient/guardian has obtained the right knowledge. In imparting this information the physician must bear in mind that what is being advocated is likely to be unfamiliar to the patient/guardian and may be confusing to them. It is therefore appropriate for the physician to reinforce any instructions, and even to ask the patient/guardian to report back to them if they experience any difficulty.

Some patients faced with serious illness may go into a state of denial and may not follow instructions or faced with a delay in service assume that the condition was not as serious as they were led to believe. Patients may also be intimidated by the bureaucratic systems they face and may accept appointments that are much later than they were assured was necessary or available.

The other responsibility that the patient/guardian has is to seek a second opinion when they are not satisfied or are in doubt. Physicians should make their patients aware of their right to second opinions or referrals for care and to facilitate such by providing all of the necessary information available.

In the report given, a referral was made for a CT scan and the patient was told that they would be called for an appointment. That call did not come for a further 6 months, and apparently no further enquiry was made by either the patient or the physician 2 months later when it is said that an urgent referral was made. It is not clear how urgent the investigation or referral was instilled in the patient, for 4 months was accepted for the referral when the patient was clearly symptomatic and a diagnosis of cancer had been made.

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