What are the social effects of “long-term dialysis”* in Germany?
The social effects of long-term dialysis in Germany result from the level of psychological and physical conditions of the patients, which are/can be very stressful:
I. Psychological consequences of long-term dialysis:
- Frustration (e.g. from having to go to treatment 3 times a week and endure pain).
- Lack of prospects (e.g. due to the lack of prospect of a speedy recovery through a transplant).
- Existenzangst (z.B durch Fall in die Berufslosigkeit Aufgrund der Erwerbsminderung).
- Fear of the future (e.g. breakup of partnership due to partner’s fear or loss of friendships).
- Danger of suicide (e.g. “Severe suffering affects sensitive people”).
II. Physical consequences of long-term dialysis:
- Physical weakness (especially after dialysis, overall due to many years of dialysis).
- Multiple surgical interventions (shunt surgery until exhaustion: shunt closure: thrombosis, aneurysms and stenoses).
- Pain (head, joints, etc.).
- Neuropathies (RLS, polyneuropathies).
- Cardiovascular complaints (highly economical dialysis centers lead to inadequate regulation and inadequate care of patients: loss of quality in the scope of therapy).
- Functional impairment of the sexual organs (complication arises from a combination of accompanying diseases).
From the above-mentioned consequences of long-term dialysis, the social impacts on the patient are immense, which can be clearly seen in:
- Partnership and family,
- Studies and career,
- Financial situation,
- Social contacts and activities.
The stability of a dialysis patient’s family, partnerships and friendships is often put under strain due to the illness. The person with kidney disease has little participation in social life due to the lack of time each week and the changing activity cycle
Family life is burdened with changes, which also leads to discord within the family: families break up, friendships break up and partnerships break up. Some people lack open communication and relationships grow cold over time.
Young dialysis patients also have problems forming relationships at all due to the growth and development disorders. Young dialysis patients have delayed growth and puberty. Therefore, those who suffer from early childhood illnesses have a smaller and younger appearance than their peers, which leads to problems.
Young dialysis patients in particular, who have been on dialysis for many years, have immense deficits in their school career compared to their healthy counterparts if they remain on dialysis for a long time with no prospect of a kidney transplant (NTP).
Not only does the time you lack (3×6 hours per week) play a big role, but also the physical adaptation/exertion that occurs after dialysis and the next day, especially if there is no longer any residual urine excretion.
This is because young people suffer from cramps and dehydration due to careless approach to diet and weight control (if they have little target weight but drink a lot between dialysis sessions, especially at longer intervals, they are 2-5kg overweight), which is not only a problem for their hearts is a big burden, but for the whole body (the burden of excess potassium and phosphates over time, due to non-adherence to diets).
It is only the next day around the afternoon, sometimes in the evening, that the body is at peace again and the dehydration gradient is slowly straightened out by filling it with fluids. For these reasons, student dialysis patients should receive free support from the state with teaching assistants or tutoring.
Losing a job due to incapacity is not uncommon for long-term dialysis patients. The heavy physical strain of HD dialysis therapy every two days also sometimes leads to job loss after a certain period of time. A dialysis patient becomes a burden on the employer over time and the company then places them in part-time work, sometimes due to many days of absence.
Although dialysis patients should be well off in Germany due to the 100% degree of severe disability assigned to them, over time many fall into disability pensions and/or part-time work. This then leads to financial hardship, which in turn places an immense burden on the patient. Early transplantation could address this problem.
Dialysis patients are significantly restricted in their range of activities. You must maintain the weekly rhythm of dialysis sessions. Therapy must not be postponed, let alone suspended, except in emergencies. There are also problems associated with the possibility of joining together for other activities, e.g. planning vacations.
Kidney patients who start dialysis in childhood have an even harder time: the time they have to find contact with healthy people of the same age is difficult to focus on. Uncertainty in intimacy Due to the appearance of shunts (in HD dialysis patients) / abdominal catheters (in PD patients) the whole thing becomes even more difficult.
The shame of not being able to show the wounds (picture 1) can be the biggest problem for some young dialysis patients when it comes to making social contacts!
The intimate interpersonal relationships, which are also based on physical contact, come to a standstill over time due to the physical surgical interventions/weakness/concomitant illnesses of the dialysis patient. For some couples, this leads to breaks and of course to separation.
*long-term dialysis: A waiting time for a kidney transplant of over 1-2 years is considered long-term dialysis.
