When dealing with end-stage chronic disease, the decisions for and against interventions can be agonizing to make and to live with.  It is important that open communication results in all options getting weighed.

Treatment for kidney disease is a choice.  Many people feel they have to start or continue any treatment offered to them.  That's not true. While your health care team can provide guidance, you are the one in control.         

It's not easy to make decisions, especially if you have not had a lot of time to adjust to having kidney failure.  Strong emotions can cloud your judgment.  You can swing between optimism and hopelessness.  Your family can help, but both you and they will need professional support to explore all medical, ethical, psychosocial, and spiritual issues.  Talking to others who have kidney failure is especially helpful.  Your decision should be an informed one.  You need to be aware of all your options, the possible outcomes and the long-term prognosis based on your treatment path (or decision).     

The options with end-stage kidney disease include:

• No treatment
• Dialysis
• Transplantation

All these choices involve risks and lifestyle restrictions.

The No-Treatment Option
People may choose not to have dialysis or a transplant for a number of reasons. 

• If they have other serious illnesses they may not want to extend their life.  
• Dialysis can be physically challenging and emotionally painful.  They may decide that no dialysis will provide a better quality of life than dialysis. 
• For some people the thought of ongoing treatment with the many complications that occur during an extended course of kidney failure is simply too much.
• Personal or religious beliefs may prevent them from considering dialysis or transplant.

People who choose not to have dialysis or a transplant can live for months or even years with conservative treatment, using diet and medication to manage kidney failure and its symptoms.  However, if an individual does not have any kidney function at all, then survival is likely to be no more than several days or weeks.  

Sometimes it is difficult to decide whether dialysis will benefit an individual. It is possible to start dialysis as a trial, usually for a few weeks.  It can then be discontinued if the individual does not feel an improvement in his or her health or quality of life.   

The decision not to get dialysis or pursue a transplant can be a very difficult to share with your loved ones.  A social worker or counselor can help. Also, you need to be sure you are making this choice for the right reasons. Your health care team can help you rule out any factors like depression or other issues that could be changed to improve your quality of life.    

Dialysis:
Dialysis helps to maintain your body's balance by:

• Removing waste and extra fluid from the blood
• Keeping the blood's chemical balance at a safe level
• Assisting with blood pressure control  

While dialysis is a life-prolonging blessing, it can also be demanding and cause major changes in your life.  Most people find ways of dealing with it, particularly if they are otherwise in good health.  Sometimes co-existing conditions make dialysis more complicated and it may not improve your quality of life greatly.

There are two kinds of kidney dialysis: hemodialysis and peritoneal dialysis (PD).  Hemodialysis is the more common, and involves the patient's blood being passed through a dialysis machine, where it's "cleaned" and then sent back into the patient.  In peritoneal dialysis, a catheter is surgically placed in the abdomen.  The patient feeds a special dialysis fluid into in the peritoneal cavity through the catheter and waste products and extra fluid are pulled through the peritoneum into the dialysis fluid through osmosis.   

There are pluses and minuses to both methods of kidney dialysis.  

In most cases, your Nephrologist will provide information about the two types of dialysis when the GFR is less than 30.  If hemodialysis is chosen, it is important to prepare for dialysis ahead of time with surgical placement of an arterio-venous fistula (AVF).  This is also known as a "shunt".  It is the connection of an artery in the arm to a vein next to it.  Dialysis nurses place needles in the vein in order to access the blood that needs to be "cleaned".  These shunts usually take several months after surgery is done to heal and develop before they can be used for dialysis.  If dialysis needs to be performed right away, it can be done through a dialysis catheter-similar to a large IV-- (intravenous line) placed in the neck.   Problems with catheters is that you cannot shower with them in place (they cannot get wet), they are prone to infection and they do not provide quite as efficient a dialysis as a shunt.  Studies have shown that mortality is higher in patients who have catheters for dialysis compared to those with AVF's.  It is recommended that patients have these shunts placed at least 6 months prior to the anticipated need for dialysis.  Some recommend that this be done when the GFR is < 20. 

For peritoneal dialysis, a peritoneal dialysis catheter can generally be placed 2 – 3 weeks prior to starting PD. 

Transplantation
Transplanted organs offer a better quality of life for many, but the demand for kidneys far outweighs the supply.

When considering transplantation, you need to be willing to accept all possible outcomes:

• You may die during surgery, from a secondary infection caused by the immune system being over-compromised, or from toxic levels of anti-rejection medicines.
• You may get a disease or virus from the donor
• The transplanted organ may not work
• Your body may reject the transplanted organ
• Your original kidney disease may recur  
• Your transplanted organ may function for your lifetime  

End-Of-Life Planning
No matter what treatment option you choose, you should make sure your family and health care team know your wishes for the end of your life as early in the process as possible.  With advanced CKD, cognitive function may decline to the point that comprehension and decision-making capacity are impaired. 

• Make sure you have a Will.
• Consider having a Medical Power of Attorney and an Advanced Directive.
• Make a list of your financial records including bank accounts, real estate, and insurance policies.
• Provide contact details of people who can help to settle your estate. 
• Let people know about your choice of funeral services.

For more information on end-of-life planning, go to Second Opinion, End of Life (Episode 313)

For more information on the challenges of caregiving and how to cope with them, go to Second Opinion, Caregiver Burnout (Episode 507) or Second Opinion, Alzheimer's Disease (Episode 505) 

Learn more about Kidney Disease:

Key Point 1: In management of a chronic disease the burden on the caregiver is great, and there are physical and emotional costs to the caregiver.  The patient is not the only one who needs to be watched and taken care of.