Our hospice sent us a survey after my dad passed away. As some of you know, we had some bad experiences with our hospice program, so I filled out the survey very honestly, in the hopes that it would help a family in the future not experience what we did. And I am not all about complaining, I wrote letters about positive experiences as well. I received a letter last week from the hospital saying they were very concerned about my survey response and would be contacting me soon. The supervisor called me yesterday. We talked for about 40 minutes and she told me all of my concerns and comments were valid and that she doesn't know how they can apologize for how they failed us. Not once did she act defensive or try to make an excuse. She said the responses are being forwarded to the board for further review and they obviously need to do some serious revamping of their program. We had the most productive conversation, and I am really glad I raised my concerns because in the future it is going to make their program more successful and other families will have better experiences that we did. I don't write this to pat myself on the back, I write this to encourage everyone to acknowledge the good and raise concern with the bad because otherwise things will not get changed or fixed for future patients. I had hesitated sending the survey in because I really try to put a positive spin on even my worst experiences, which I realize now is a coping mechanism for me.
Last edited by laurah01; 03-30-2012 at 06:11 PM.
Dad diagnosed with Stage IV PC with mets to liver March 4, 2011 ~ Died 11 months later, February 4, 2012.
Good for you for being honest on the survey! It seems like you are getting the appropriate response from the hospice provider and if it helps out just one other family, then it's all worth it.
My mom passed away after routine surgery last year. Her allergies were well documented in her charts and patient history, yet they still gave her heparin, which she is allergic to, and they had to rush to stabilize her. They profusely apologized and it seemed as though no harm was done. The doctor then put a huge sign over her bed that said "Heparin allergy". Two days later, with a new doctor on rotation, they gave her heparin AGAIN! Once again, they stabilized her, but when her weakened body didn't get better, she declined in health quickly and passed away a few weeks later. She never left the hospital.
I'm not saying their actions hastened her death, but it angered me beyond belief. I had it out with her medical team and they took everything I said without excuses and owned up to the errors. I hope that they are MUCH more careful with the drugs they administer and not to take anything for granted.
Laura, you did the right thing...and although sometimes the path of least resistance is easier...it's not always better. You have good advice, and I hope more people follow it.
This dark night shall end and the sun will rise again...
- Dad diagnosed in 1992 with primary bladder cancer
- bladder removed and new one made from resected intestine
- chemotherapy regimen started
- mets to large intestines discovered in 1993...more chemo...tumors disappearing
- complained of neck pain Dec 1994. Mets to brainstem confirmed
- passed away Feb 24, 1995
Laura- In case I havent mentioned earlier Im sorry for your loss .-Thats good you felt comfortable enough to address your concerns- you will definately be helping people in the future. I believe in also if I can complain I can also compliment and I do this with everything. Its good to be honest. Otherwise nothing would ever change nor improve. thank you from all of us that may need them in the future- generally Ive heard mostly good things- It may have just been your prticular group.
April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
port-port rejection-port removed 1week.
Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
transfusion central line TPN 1 month.
oct-09-surgery tumor ,colon and jejuneum removed.
xeloda reduced. severe dehydration,heart attack.
mar-11 return to original site-oxyplatin,5fu
dec-30-back to chemo erbitux camtosar
Jan-16 injections neulasta and aranesp
feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
starting a regimine of celebrex
aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
sept/10-12-good urologist report one kidney functioning well for now.
oct/23/12-chemo pill Stivarga(regorafenib)
dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
Feb/21/13 neulasta injection
Feb/22/13-blood transfusion. still taking stivarga.
mar/20/13-arenespt injection rehydration and magnesium IV
mar/21/13-acute renal failure-kidney infection
april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
swollen hand no apparent reason black spots in vision off and on. both cleared up.
may/22/13-home oxycodone for pain shoulder neck arm
june/1/13 pain subsided off oxy onto aleve
june/09/13-pain back off aleve on vicodin
june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
june24/13-last day of radiation-on steroids
july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
july 23/13 vicodin cut in half blood transfusion.
sept/6/13-off all pain meds since late aug
scan results fracture in spine mid back
sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
nov/7/13-edema both legs and one arm on lasix since oct.
nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.