Parent with terminal cancer---can anyone who dealt with this share advice and what to expect?

For the SD Record, here is what I learned about hospitals and a lot of what I’m posting here was duplicated by my wife’s experience when her mother spent a month with a non-cancerous intestinal issue a little over a year ago:

  1. There’s no “appointments”. Unless you are prepared to spend 24 hours with your loved one, be prepared to hear all types of stories and claims from the patient, based on what they were told by various practioners from the surgeon, to the oncologist, nurse practitioner, social worker, surgeons chief of staff, RNs, discharge nurse, the nurses. Why, even if you are there all 24 hours, you will hear many versions of the story. Imagine what the patient whose brains are mush thinks they heard. And no, these various practioners will not call you to let you know when they will visit the patient.

  2. When in doubt, email the surgeon. Ultimately, they are responsible for the patient and they make the final decision about what happens next and when.

  3. If it’s a surgery involving the guts, be prepared to see your loved one literally starve to almost to death in front of you. They will spend many days with a vomit tube and whatever you are told, expect they will have to wear it longer than originally told. The patient will do ANYTHING to avoid the Tube and will devise scams:

  4. Be thin skinned.The day after my mothers surgery she yelled at me and demanded I get her an anti-acid which was against the doctors regimen, turns out they had a drip for that. The next day she yelled at me for not contacting the doctor about several issues she had in her head and at the nurse for not giving her enough ice cubes to suck on (she wasn’t allowed ANY food until the tube is taken out). As a matter fact, my mother even tried to con my nephew into finding an ice machine so she could get more ice cubes, against doctors orders. He was caught and shut down. The good news is the nurses told us a feisty patient is a good thing.

  5. Expect hysterical phone calls from the patient. Even though the surgeon explained to my mother her limited options, apparently the Social Worker stopped by and dropped off living will documents to my Mother who was without relatives, and somehow this turned into a hysterical phone call to my sister that some woman walked into the room and told her she was dying.

  6. As annoying as it sounds, you must be proactive. You’d think the hospital would be, but remember hospitals are run by humans and humans create 99% of all problems. So far we caught my mothers vomit tube not being hooked up right, and she didn’t have oxygen. Neither problem would be brought up without us ringing the bell and informing the nurse. If something doesn’t seem or look right, do t hesitate to contact the staff. Yes they are busy, but they also are paid to do their jobs. Be tactful but don’t be shy.

Very sorry to read of your situation.

My 6’, 100 pound, 90 year old mother was active her entire life.

She was in the hospital recovering from pancreatic surgery, when the physicians informed her that she had cancer basically everywhere. And the end was near.

She didn’t like the prognosis. She removed the oxygen mask, and died one hour later. I saw the reflection in her eyes go dimmer and dimmer, then gone. It was very difficult experience for my sister and brothers to observe.

My sister was upset that the physicians told her the news. But, in the end, my mother was in control of her life, as she was her entire life.

  1. Cancer might not be the only thing. My mother ended up having a blood clot that caused a pulimory embolism and got into her lung, causing her to survive on a bi-pap mask. She also contracted pneumonia and has bed sores. And back pain from sitting in bed. While cancer might be what brought them to the hospital, it might not be what eventually kills them.

  2. Just when you think it’s over, it ain’t over. Friday my mother was about ready to go home for chemo. Saturday she has the blood clot and the mask. Sunday she’s ready to take off the mask and die peacefully. Monday she changes her mind at the last minute. Tuesday she asks to try the temporary mask and passes out and we decide to let her sleep peacefully and pass that way. 3 hours later she wakes the fuck up and is speaking and alert! Now, we are talking hospice.

  3. Be ready for a million doctors, nurses, social workers, palliative doctors, visitation buses, lung doctors, oncologists etc etc who might not necessarily be communicating all with different opinions that can vary literally within the minute. Again when in doubt email the surgeon.

  4. If you are the spouse or child, and think ending it is the best option, keep other relatives/friends at arms length. You have final say if your relative can’t speak for themselves. But nephews, sisters, etc etc will show up and do all they can to encourage your loved one to continue their pain and fight on even if they don’t want to. This should be a decision YOU make. The less interlopers talking in their ear, the better. Be prepared for some of them, to get angry with you for deciding to “pull the plug” and even devising schemes to keep them alive longer.

  5. Just because someone is a doctor doesn’t mean they are smarter than you or they have your loved ones life as their priority. Remember someone had to graduate at the bottom of their class. When my mother fell asleep one of the 1000 doctors told us she was going into a coma from a CO2 buildup in her lungs and that diagnosis prompted us to not put the breathing mask back on. Turns out it was Adavan that was knocking her out but by the time we figured that out to put the mask back on would have caused so much damage to her body it was to late. It worked out that my mother hated the mask. She can now eat, and accepted hospice----- but I feel like I may have been manipulated into that decision a little bit. I could be wrong and maybe it’s accepted medical practice to guide a family to end a relatives suffering-----but be prepared to feel manipulated or guilty no matter what decision is being made.

  6. When it comes to death, most of us shit our pants. I spoke to several doctors and they told us no matter what stiff upper lip someone brings to the hospital, when faced with the gun to their head, 9 out of 10 patients will change their mind and choose whatever it takes to stay alive. Don’t be ashamed and your family should not be ashamed if your loved one decides to stay alive as long as they can, no matter how.

You only have final say if you’re the spouse, or the dying person has explicitly designated you in writing - but the rest - yeah. My one brother behaved horribly when my mother was in the hospital, threatening to go to court to have my other brothers set aside as having medical power of attorney, and threatening to force Mom to undergo some procedures she had explicitly said she did not want (bronchoscopy, she had lung cancer).

Chemo: do ask a LOT of questions re the benefits versus side effects. If the chemo might buy her a bit more quality time - or improve the quality of life even without extending it, and isn’t too awful, that’s worth considering.

So here is the latest of many Sunday Surprises from these clowns.

My mother was admitted into hospice Thursday after choosing not to use a bi-pap ventilator after getting a blot clot in her lung and possible pneumonia. Monday her blood pressure dropped and she fell unconscious and has not woken. Tuesday some nurse came in and said that starting Wednesday, based on a Medicare rule, she would be charged $350 room and board because her condition “changed”. I don’t recall how, but the words “acute management stage” and “routine level” were mentioned.

We told the nurse we were told by the hospital social worker she would only be charged $350 a day if she took oral meds instead of IV; the hospice nurse said that was no longer the case and she would make sure she knows this going forward.


The hospice is owned by the same hospital.

Does this rule sound accurate? If not, are there appeal options? Who makes the actual determination to charge my mother room and board and when? Someone at the hospital or some Medicare employee?

Frankly, I don’t think its going to be a big bill, sad to say, but the whole thing sounds shady to me.

I’ve tried to find answers on the Internets already, so if someone knows a good resource for answers to these questions greatly appreciated.