My mom will be 78 in December if she makes it to her birthday. I spent that last two weeks at home with her in NY after a one week hospitalization after serious stomach pain-she was unable to get out of her chair. She has ESRD on 3x/week hemodialysis, congestive heart failure (with pacemaker for a-fib), diabetes and now indications of cirrhosis and ascites. At the hospital they took of 7L (16#) of fluid. The second paracentesis on 14 October, 3.5L was drained. She tends to have very low blood pressure. Both her hospital care team and now her PCP have said she likely has 6 months to a year to live. They have not said why this is (honestly, I didn’t ask, I assumed her system is simply wearing out ?) What is her death likely to be like? We have DNR, DNI and health proxies now documented for her but she asked me the question and I didn’t know how to answer. I know if she gets too tired she can just stop dialysis, but how long would she live if she did that? Will her heart, her kidneys or liver be what kills her? I hate to see her suffering. Her life has been so difficult. She is a devout Catholic, I doubt she would choose suicide, but she already sees herself as a burden to others. I am a social worker (mental health, I treat vets with PTSD) and have worked mental health/chemical dependency for many years with the Air Force, but I’m out of my element with this. And she’s my mom. The best I’ve been able to do for her is be with her and help her make decisions about funeral, burial, etc. What else should my siblings and I be sure to consider?

You and your family are going through a very difficult time and you may need professional help.  The best advice I can give you is to sit and listen to your mother’s wishes.  She will cherish your interest and this will help her more than any physical help you can provide.  If your mother’s wishes are to live as long as she can and as well as she can, it is often best to enlist the help of a Palliative Care physician or a Hospice service.  Patients on dialysis can opt for hospice and continue dialysis for a time as long as she has other diagnoses that qualify her for hospice.  Her heart disease, liver disease and kidney disease are all factors in her current medical status and heart disease and liver disease could be used to enroll her in hospice services.  I suggest that you ask her primary care physician (PCP) or her nephrologist for referral to a hospice service or a Palliative Care physician to see is she is eligible for services.  The hospice care services can help you and your family deal with end-of-life planning and also help your mother make the best decisions for her care and comfort.

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