Patient’s story: Barbara (Switzerland)
My name is Barbara. I’m 34 years old and I live in Berne, Switzerland. For over six months, I already had problems walking. Once, I collapsed duringRead more
“The most important thing to remember is patients are, first and foremost, human beings. As a urology nurse, I help them identify what is most important to them and in doing so, helps them optimise their Quality of Life”.
By Mr. Lawrence Drudge-Coates
Uro-Oncology Clinical Nurse Specialist and Hon. Lecturer
Kings College Hospital NHS Foundation Trust, London (GB)
My general role
As an autonomous nurse practitioner, I am involved in the care pathway of patients with all types of urological cancers, working as part of a multiprofessional approach with a specialist focus on bladder and prostate cancer.
With prostate cancer, I see men from the very beginning of their patient journey to the advanced stages of their disease. Regarding bladder cancer, I am involved in the initial assessment of haematuria and bladder cancer follow-up as a nurse cystoscopist.
My other roles and responsibilities
Part of my unique roles include the initial assessment and examination of men suspected of having prostate cancer who are referred to the hospital by their general practitioner (GP). I explain and carry out the relevant tests and examinations that need to be undertaken. Then I summarise the findings and organise the relevant scans and biopsies as needed. This is a stressful time for the patient. It is important to be thorough and clear about the next steps regarding their care, even if the initial news is not good.
The assessment not only evaluates the physical aspects but it also brings a more holistic approach to care. Practical social issues, current living circumstances, employment, family unit and support network, spiritual concerns, and sexual function concerns, all of which are often significantly affected. These are some of the key factors that will have an impact on the Quality of Life rather than just the diagnosis of cancer. This is something which I believe as a nurse, is the key to an effective assessment.
Guiding the patients
It is important that patients understand their treatment, what to expect from it and what are the treatment effects (I tend not to refer to them as side effects). In the UK, it is mandatory for all newly-diagnosed cancer patients to be seen and/or assigned with a key worker, who is primarily a nurse. In our department, it will be myself or one of my two colleagues to support the patient through their cancer treatment pathway, alongside the rest of the multiprofessional team.
As part of a three-nurse team, in conjunction with our urologists and oncologists, we go through the treatment approaches in greater detail. We explain the effect of treatment and specific issues related to Quality of Life to the patients. These can include fatigue, changes in appetite, sexual and urinary dysfunction. We help guide the patient though this decision pathway. When there are a number of approaches available, the patient will often decide based on what is most acceptable to him with regard to the Quality of Life aspect. In addition, we supplement good evidence-based and peer-reviewed information.
All of our newly-diagnosed patients are given a “cancer diagnosis information pack” specific to their cancer which provides them with our contact details, psychological support services, details on financial support, and how to get prescription charge exemption, to mention a few. This is then supplemented with specific treatment information. It is, of course, aimed at being very practical, and that’s the key. But it is also tailored to take the patients’ own concerns and needs into account.
We encourage the patients to come with their partners or family members to help filter and retain the information, as it can be difficult for the patients to take it all in. For example, in preparation for radical prostatectomy, the patients will attend a pre-surgery seminar as part of their “prescribed care”. This aids in addressing the issues and questions regarding the surgery. It also introduces them to the members of the team whom the patients will come into contact with during their treatment and discharge.
My role involves both the outpatients and ward settings. For example, I see patients post completion of surgery and radiotherapy, and continue the follow-up care. Quality of Life issues may relate to concerns regarding their urinary and sexual functions, bowel-related issues and of course, how they have responded to treatment. I assess, address and discuss these issues with them or refer them on when needed.
In the UK, patients are encouraged to complete a London Holistic Needs Assessment form which allows them to identify issues of concern along their care pathway. This provides an important platform for follow-up consultations and issues that may well effect Quality of Life – an important factor in survivorship.
It is important to ask the right questions and to empower the patient to speak up. Some patients will tell you they are fine but their body language or their partners will say otherwise. It is not only important to talk to them but to really look and listen.
Suffering in silence
I remember seeing a man in the clinic with his wife present during his hormone treatment for advanced prostate cancer. I asked how he was doing. He said very little but his wife told me “He’s miserable as hell because he can’t play golf.” When I asked why, the man then told me he was getting pain in his back and he could not play 18 holes. This had been going on for three to four weeks but he had decided to suffer in silence.
No evidence of pending nerve root nor cord compression was evident. However, he did require some palliative radiotherapy in addition to first-line analgesia. Although he was not able to play 18 holes after treatment, we did get him to play 9 holes. He was finally able to do something that he enjoyed and took his mind off his cancer. He had more energy because of exercise and this allowed him to catch up with friends. It is often the simple things such as these that make the most difference to patients and their Quality of Life.
Break the taboo
I always ask about sexual function, but it still remains somewhat of a taboo subject. In most cases, it is influenced by the patient’s culture, so a lot of men do not talk about it. Sexual function can be a significant issue and can affect the Quality of Life in a relationship. And one thing to remember, do not be ageist! Quality of Life means something different to everyone.
Additional support from the nurses
In the ward, the issues may relate to the treatment that we need to start already; for example, hormone therapy for men with metastatic prostate cancer. Patients may already be in pain, immobile, frightened, not in control, and confused as to what is going on. Along with the team and ward-based nurses, we address the issues involving the pain. It is so important that the patient understands what is happening and what the next steps are. We also liaise with family members and their GPs. These are all important for Quality of Life.
As nurses, we will initiate the hormone therapy. We will explain what the treatment is for and that the therapy will not cure their disease, but we will provide treatment and inform the patients about the effects. More importantly, we will also arrange the follow-up appointments, where they will often be seen by the same nurses to help build key relationships. In conjunction with the ward-based nurses, we will also ensure community nursing support when required. As the patients’ key workers, they will always have access to myself or my colleagues to discuss any ongoing concerns that may affect their Quality of Life.