Transplant conference session puts patients at the centre

The importance of involving patients in their own care and ensuring that their voices are heard was the theme of three presentations within the Patients Inclusion Initiative, a joint EPITA/EDTCO/ETAHP symposium to close the 11th European Pancreas and Islet Transplant Association Symposium and 40th Artificial Insulin Delivery Systems, Pancreas and Islet Transplantation Workshop.

First up was Professor David Paredes-Zapata from Hospital Clinic Barcelona. A great proponent of patient inclusion. his clinic has gone to great lengths to improve the patient experience and give them a voice.

By co-creating a stakeholder map of the transplant journey with input from patients, clinicians and caregivers, they look carefully at every detail of what the patient goes through, even up to the post-operative experience – it can be very isolating, for example, if they no longer have a sense of belonging at their dialysis centre – and the factors that can affect their journey, such as age and disabilities.

They stay in regular contact through online support and phone calls, give them clear literature and the patient is given a contact person for any questions they have.

We are adding value, Professor Paredes-Zapata said, by talking more at every stage from referral to recovery. Information should be given periodically, slowly and not all at once. He drew out a pertinent line from the International Bioethics Committee of UNESCO report on consent: ‘Requesting and obtaining consent is NOT a one-time affair but it is often a process where discussion with the patient is needed at several succeeding points in time, through an ongoing dialogue.’

They must also be part of shared decision-making and involved in the discussion about their care because it is in everyone’s best interests. He highlighted a line from a New England Journal of Medicine piece: ‘Talking is also required for engaging the patients in their care choices, and when patients are actively engaged in decision making, they have better outcomes and less expensive care.’

Fear of failure

He was followed by Anna Forsberg, professor of transplant nursing at Lund University, who gave an eye-opening presentation on the emotional aspects of transplantation.

To better understand the patient experience, a survey was recently carried out asking the key question: what are your main concerns regarding transplantation? Recipients in 27 countries responded and the primary concerns were graft rejection and graft loss/organ failure.

While transplant professionals see rejection as common, treatable and manageable, she said, it is important to recognise that the patient may see it very differently. They may feel a strong sense of threat and this can result in intrusive anxiety.

This was demonstrated in a study done by her team, which showed that some recipients experienced fear that graft rejection would lead to a loss of health and maybe even death, and of being just as ill as before the transplantation. Descriptions include ‘walking on a knife edge’ and ‘overwhelming fear’. For some, it was a constant, ever-present threat that allowed no peace or rest.

For some, the biopsies are intensely stressful and lead to fear and anxiety while awaiting the results; for others, the fear was triggered every time they took their immunosuppressive medication.

When asked the best way to help them, answers included: to be taken seriously, have the psychological aspects acknowledged, be involved as a partnership and collaborate with their clinicians, and be offered clear information.

In the ensuing Q&A, she gave a wonderful example of care. One tool for identifying patients who may have difficult feelings is what she calls an existential biopsy – she asks ‘Whose organ do you have?’ and if the answer is ‘mine’, it’s a sign that they have accepted it; if the answer is ’I don’t know who the donor was’, it’s a sign that they’re struggling with the process and need further counselling.

Both the survey and study are well worth reading if you care for transplantation patients to better understand their psychological as well as physical needs.

Pre-transplant assessment

Finally, clinical nurse specialist (CNS) Cris Pollard, from the University Hospitals of Leicester NHS Trust, shared her expertise on the process of assessment prior to transplantation. She works with patients before and after pancreatectomy and islet autotransplantation (TPIAT), in which the patient’s own islets are given back to them at the end of the procedure.

Chronic pancreatitis is a painful and debilitating condition that is difficult to manage, and depression, anxiety and opiate dependency are common in these patients. However, the surgical solution is a major undertaking, with significant morbidity and mortality for what is a benign disease. Furthermore, it’s not always possible to isolate the islets, meaning that the patient would be left with diabetes.

A robust and vigorous assessment procedure is therefore essential to ensure that the patient genuinely understands the magnitude of the surgery and the slow, hard work involved in their recovery.

At their clinic, the patient is seen by a surgeon, then goes on to be assessed by a CNS and a multi-disciplinary team comprised of a clinical psychologist, diabetologist, pain specialist and gastroenterologist.

The patient is also introduced to previous patients as a support network and they have support from a CNS throughout. Any member of the team can veto the operation – for example, the pain specialist may say that all avenues of pain relief have not been explored. The outcome of the assessment and consent is then discussed at a dedicated outpatient appointment with the surgeon.

What is notable is that, although the multi-disciplinary team makes the decision about whether the procedure is allowed to go ahead after both physical and psychological assessment, the patient is carefully involved, supported and thoroughly informed so that they have realistic expectations, and their psychological readiness is a large determinant. Without this in place before consent, there would be a much higher chance of a negative outcome.

Each of these three presentations showcased the dedicated, compassionate work that is being done to provide gold-standard care with the patient at its centre. The better outcomes that result improve quality of life for the patient as well as being economically beneficial for healthcare providers.

For more on this topic, see our course ‘Islet transplantation’.

The opinions expressed in this article are those of the author, Dr Eleanor D Kennedy.