Fatima Silva, Renal Nurse, Portugal
Caring for renal patients on dialysis is not just about providing them with a dialysis treatment three or four times a week. When a patient begins treatment in one of our centres, they become a part of our family, and we often become part of theirs. Many of our patients may not have a good situation at home, or they live alone, so we become both their caregivers and their support network. We care for our patients as a whole person, including all their issues – these could be issues of mental or physical health, but also at times social issues. For chronic dialysis patients, who we will see for 15 or more hours every week potentially for the rest of their lives, we are caring for more than just their kidneys.
From my perspective, the most important thing to improve the dialysis experience for our patients is the care orientation of the team. That’s why we choose our staff very carefully – it’s important that a caregiver be more than just a good technician, you need to be also a good and caring individual. Only a caregiver who loves dialysis can work full-time in dialysis. We treat chronic patients, and we understand that sometimes they feel unhappy because of the impact of their disease, and we are the people they direct those feelings to. That can be hard as a caregiver, but at the end of the day we know that they are expressing their feelings, and they know that we are here to help.
“What is the most difficult part? When a patient dies. We take our patients into our family, and if their chair is empty, we miss them.”
“I want my dialysis clinic to be friendly because I spend a lot of time there.”
J.K., 33 years old, dialysed since 2010, Poland
Renal disease is a chronic, irreversible, and incurable disease. My world collapsed after I was diagnosed with end-stage renal disease. Now I’m dependent on my dialysis clinic, and my dialysis machine. I’ve also needed to learn to cope with food and fluid restrictions, and chronic medication. The hardest thing for me has been to accept this illness, and then to learn to live with it. In this, the support of my partner and my family has been essential, as has the professional support from the nursing and clinical staff at my centre.
What’s important during dialysis? It’s important that the medical and nursing staff are professional in ensuring both our safety and our comfort during treatment, but their friendliness in the care they give is also very important. I also want a good relationship with my fellow patients, which can be difficult because we are all chronically ill. I want my dialysis clinic to be friendly, because I spend a lot of time there.
For patients who suffer from end-stage renal disease, kidney transplantation is the only way we can live as healthy people. Kidney transplantation is my biggest dream.
Professor Stefan Jacobson, Karolinska Institutet, Sweden
Chronic renal disease is a common disease affecting 10-15% of the Western European population. Managing chronic renal disease is not just about treating the kidneys. If the kidneys fail, other complications follow, and chronic renal disease is also associated with an increased risk of early cardiovascular disease and infectious diseases.
Education on the risks of chronic renal disease, and early intervention to slow the progression to end stage renal disease and kidney failure, are critical. Once chronic renal disease has progressed to the point where kidney function is insufficient, kidney transplantation is the best option. However, transplantation is not without risk, and may not be available or suitable for all patients. Fortunately, improvements in dialysis technology and advances in treatment have translated into improved quality of life for patients suffering from chronic renal disease, and today, dialysis is a “new normal” for many patients and their families.
Dialysis has been a clinical practice for many years. In Sweden, dialysis began in the 1960s. Before this, patients who progressed to end-stage renal disease died. In the beginning, typically only a small group of young and healthy candidates was selected to receive the limited dialysis support available, and renal replacement therapy (RRT) was only provided prior to transplantation. With advances in technology and care, dialysis treatment has changed from being a way to survive kidney failure for a few, to a way to live a happy and productive life with chronic renal disease for many.
As our patients live longer, healthier, and more productive lives, ensuring safe, effective, and high-quality treatment becomes even more critical. Poor quality treatment can result in many different adverse reactions, including hypotension or even a risk of hepatitis. Today, we have some patients who have been receiving dialysis treatment for more than 30 years.
For patients living with chronic renal disease, individualised care and treatment choice are critical. Different treatment modalities – haemodialysis, peritoneal dialysis, nocturnal dialysis – in centre or at home – more or less frequent treatment – may be more suitable at different stages in life. Increasingly, there is also a higher focus on patient education so patients can understand their treatment options and be more active in their own care.
The dialysis experience for our patients extends beyond their treatment. Efficient transportation to and from the centre, the option to read or watch TV or even use the internet in a pleasant environment while undergoing routine four-hour treatments, and a good and nutritious meal all impact their overall experience, and quality of life. What is important is that we provide a system of support, caring for the needs of the whole patient over the course of their lives.
“For patients living with chronic renal disease, individualised care and treatment choice are critical.”
“This illness has taken away my independence. I can no longer freely make decisions about what I do with my time.”
H.S., 78 years old, on dialysis for 3 years, Germany
This illness has taken away my independence. I can no longer freely make decisions about what I do with my time. On days when I go to dialysis, I lose four hours of time – and for me, those days are largely lost, because after the treatment I am usually exhausted.
Another way that I am dependent is on the dialysis personnel and dialysis treatment itself. I am dependent on their help and their decisions on the necessary treatment, I can’t move freely while I am on the machine – I feel restricted.
Again and again, my fellow patients disappear. At some point, they don’t return to the centre – they die. It makes me sad – we’ve become accustomed to each other, we share the same experience, and then suddenly, someone is missing.
What is important to me during the treatment? Privacy is critical. Friendly and caring staff makes it much easier to bear the treatment. I also appreciate the consideration of the assisting staff, who give us small snacks during the difficult treatment, and are always ready with a kind word.
The quality of the medical care must be good. It’s important that during the dialysis time I feel I am personally cared for and treated by both the physicians and the assisting staff.
I also value the contact with my fellow patients – both friendly exchanges, and small favours. I always bring my dialysis neighbour music that I think she might enjoy (we share the same dialysis time, and she is always in the chair next to me).