Beaumont Hospital Kidney Centre

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Supportive Care of Kidney Disease

When dialysis was first introduced, its availability was reserved for the younger, fitter and employed person. Over time, these restrictions were lifted, and dialysis is now offered to all patients, regardless of age or co-morbidity (having other health problems). This has resulted in many patients enjoying a longer life than would have been possible years before.

If you are reading this article, it probably means that you, or one of your family members, are facing the prospect of your kidney function advancing to the stage that a decision is required as to whether or not you/ they will need dialysis to prolong life. Before making that decision, get as much information as you can about what is involved in dialysis, what to expect, and how it might affect you.

Not all patients do well on dialysis, and, for some, there is a marked deterioration in quality of life, though this is not entirely predictable. Some patients may experience dialysis as an excessive burden, which provides no net benefit. People who are already struggling with health problems, over many years, may reasonably wonder if dialysis will make their life any better or will it prolong their suffering. Is the onset of end stage kidney disease a sign that natural life is coming to an end?

Is the option of dialysis a burden to be faced or an opportunity to prolong life? The best way to make these very important choices is preferably in discussion with your doctor and medical and nursing team. This includes your GP, your Nephrologist (kidney specialist) and their team, and the specialist nurses. They will be in a position to give you the facts relating to your individual situation. It is also advisable to include your family in the discussions as, obviously, your welfare will be of concern to them and their support will be important to you, whichever decision you make.


Possible Reasons Why People May Opt Not To Have Dialysis

  • Age / Frailty — “Am I too old?”
  • Co–morbidity — “I already have heart disease, or diabetes, or chronic lung disease or many other conditions.”
  • Malignancy — I have cancer. How will dialysis affect that?
  • Psycho social issues — “I live alone, how will I manage? Who will help me?”

Many patients with some, or all of these questions, do quite well on dialysis, so use this list to help you make the right decision, rather than to steer you away from dialysis.

No one can predict the specific time/date of death of another, but it may be helpful to ask your doctor how long you might be reasonably expected to live with or without dialysis.


What If I Cannot Decide?

If you find it difficult to decide , you can opt for a trial of dialysis. This means that, for an agreed period, such as 6 weeks, 3 months, or whatever you decide with your doctor, you will have dialysis treatment to see how you get on with it. After a trial, you may decide to continue with dialysis or stop dialysis treatment altogether.


What If I Decide Not To Go On Dialysis At All?

The doctor and his/her team will respect your decisions and make plans to continue your care under a programme called Conservative Management. This means that you will receive all other aspects of kidney care, with the exception of dialysis.

Before this commences, the doctor will want to discuss your decision with you, to ensure that all possible interventions have taken place, to optimise your medical manage-ment. It is also likely that an assessment, for depression, will be offered to ensure that a depressive episode is not a contributory factor to your decision. Sometimes, an assessment of cognitive function and capacity is required.

Symptoms will be reviewed and appropriate medications prescribed to manage these. Your GP will be notified regarding your care and, depending on your circumstances, e.g., distance from the hospital, it might be beneficial for your care to be managed, by your GP regularly, with access to the kidney team for support as the need arises.

You will be guided through what to expect by the Ambulatory Care Sister whom you will meet at the clinic. She will liaise with the Patient Care Co-ordinator and your Public Health nurse will be notified. Help and support, from your local health service, will be requested as and if you require them.


When Will I Die?

This is a very difficult question to ask and to think about. It is also a difficult subject to talk about with your family. The sad reality is that death will eventually be the outcome of kidney disease, without dialysis. The timing of death will be different for everyone, depending on what kidney function, if any, you have, other medical problems, your age and other factors. People, managed conservatively with chronic kidney disease, have lived from 5 years to a few weeks.

Being in a position to make decisions for yourself, about what you want, when the time comes, can actually be a help. Most people would choose to die at home, and this is possible with support from family and community nursing. Other options include hospital or local hospice care, depending on which area of the country you live.

Patients, already resident in nursing homes, may remain there and be cared for to the end of life. What is important to know is that you will not be alone. You will continue to be offered expert medical advice regarding management of your condition and its progress. Specialist Palliative Care is available if your
condition becomes complex. The aim of conservative management is to keep you as comfortable as possible until natural death occurs, supported by family and community services.


Peace Of Mind

To ensure your peace of mind it is advisable, at this time, to consider the following:

1. Making a will.
2. Discussing with your family personal preferences about your future care, in the event that you were unable to make decisions for yourself. Given that you may live for a number of years with conservative management, would you want to be resuscitated if you suffered a cardiac or respiratory arrest? Would you want to be put on a ventilator?

These are very difficult questions, but, by you giving them some attention now, you might prevent a very difficult situation for your family.

— Should you decide not to opt for resuscitation, this will be clearly documented in your chart.
— You have the right, at all times, to change your mind and opt for dialysis and / or resuscitation if this is medically feasible.


How Will I Die?

This is impossible to predict. As time goes on and as the end gets closer, some people become progressively weaker and may slip into a coma. Symptom management will be adjusted to provide maximum comfort at this stage.


What About My Family?

Help and support will be offered to your family throughout your on-going conservative management, as required. Contact details will be provided at the kidney clinic.


If I Start Dialysis, Can I Stop It?

Yes. Any patient who opts for dialysis is entitled to stop dialysis if it becomes too much for them. Sometimes, the patient comes to this decision first and other times it may be suggested, by the medical team, if it is apparent that dialysis is no longer suitable or beneficial to the patient.


Withdrawal Of Dialysis

If dialysis treatment is no longer possible or tolerable, the aim will be to make you as comfortable, as possible, by carefully managing symptoms and supporting for you and your family through all stages of the dying process. No two people will experience discontinuation of dialysis in the same way, so each person’s circumstances will be supported as appropriate to them. Some people will opt to die at home, supported by their GP and community nursing services. Others may prefer to be in hospital when the time comes.

While talking about end of life issues are difficult, many people experience a sense of relief at bringing the discussion into the open. It helps ensure that your wishes are known and can be honoured. It is also helpful, to your family, to know beforehand what your wishes are. The staff of the kidney unit welcomes the opportunity to discuss and explain further any issues raised in this article.