My uncle is in End Stage Renal Failure

[susan]

(Topic from archives: Originally posted 10:53:19 10/22/2003)

I just spent the last two days saying good bye to my 80 yr old uncle. He has decided not to have treatment. His quality of life for the last 2 years has been declining and he is ready to die. This has been very hard on the family. He is going home with hospice care today. We are unsure of what to expect between now and when he may go into a comma and ultimately death. Can you give me some information of what kind of pain he may endure and what we can expect?

[Beth Witten]

When someone decides to stop dialysis, usually they die within a
couple of weeks. During this period, they get short of breath,
fluid builds up in their body and they get puffy, muscles become
weaker, they may have muscle twitches, they get forgetful,
confused, sleepy, and eventually lapse into a coma. Sometimes
you will see a "frost" on their skin from the toxins building up
in their body. Many die from cardiac or respiratory arrest.
Patients and their families often worry about whether they will
suffer before they die. Most of the time, the nephrologist can
prescribe medications that will keep the patient comfortable.

I'm glad to hear that you have hospice services. People that
work for hospice agencies are very experienced in working with
patients, families, and other healthcare providers. They are
very strong advocates for patients and their families and will do
their best to make sure that your uncle's last days are as
comfortable as possible and that your family's needs are met too.


Tips:
1) Talk with the nephrologist about what to expect and what
medications he/she plans to give your uncle in case he needs
something for pain or anxiety.
2) Talk with the dietitian about what foods your uncle can eat.
The dietitian may remove suggest that he be allowed to eat what
he wishes. However, limit the amount of fluids he drinks to keep
him from getting too short of breath.
3) Be sure that he has an opportunity to speak with those that he
cares about and that his spiritual needs are met.
4) Find a bereavement support group to help you deal with the
loss that you will likely feel after your uncle dies.

Some resources that may help:
* The National Kidney Foundation brochure on stopping dialysis
includes practical information
http://www.kidney.org/general/atoz/content/dialysisstop.html.
* For advance directives information, see the National Kidney
Foundation brochure at
http://www.kidney.org/general/atoz/content/advancedirectives.html
* Partnership in Caring has state-specific advance directive
documents you can download as well as other information to help
patients and families
http://www.partnershipforcaring.org/HomePage/
* Hospice Foundation of America has information on hospice,
publications, resources, and a place for family members and
friends to share their grief
http://www.hospicefoundation.org/[/url]
* You can read an excerpt from Hard Choices by Loving People by
Chaplain Hank Dunn and there is a link more information
http://www.hospicenet.org/html/choices.html

Whatever you do, make sure that you take care of yourself and ask
others for help when you need it.