Needs a Hospice Nurse's help!!

[JRS75]

I have been a public health nurse and nurse educator for 11 years. I currently live across the street from my uncle who cares for his wife full time. She has early onset dementia and is in the end stages. She is non-communicative, is bedridden, incontinent, and just recently has changed in her ability to even chew the food that she is fed. She has skin breakdown in several pressure areas, and requires suctioning. My uncle does everything for her; Dresses, bathes, feeds, transfers, etc. As far as transferring goes, he lifts her as dead weight. I have somewhat of an ethical dilemma and I'm not sure how to approach it. I know, in my nursing judgement, that B.A. is not getting the care that she needs, and this should be reported. However, I am very close to this uncle and I also know that her husband loves her very much. He has voiced that he absolutely does not want to place her in a skilled facility. How can I approach this subject with him, without offending him, or hurting his feelings? How can I convince him of placing her in hospice care without threatening him?

[tewdles, RN]

It sounds like your aunt is in the last stages of dementia and would very likely qualify for hospice support. This support could very well result in your uncle realizing his goal of keeping his wife home until she dies.

It sounds like your aunt has a FAST scale of 7d or more which would suggest a prognosis of 6 months or less.

I would recommend that you make it a point to sit with your uncle and speak frankly about the end of your aunt's life. Discover what his goals are and then let him know how hospice can help him. Have him call the physician office and request a referral to a local hospice of his choosing.

Thank you for advocating for this couple.

[Whispera, MSN, RN]

Hospice can be such a blessing for those in your aunt's and uncle's situation. A visiting nurse and visiting caregiver can take a huge burden off your uncle and also see to it that your aunt gets the best possible care to help her be as comfy as possible. She wouldn't have to be in a nursing home with hospice care, where she might be headed toward that if there isn't some care other than your uncle, soon.

By the way, too....being in hospice doesn't mean anyone is giving up hope. People get better sometimes. While that might not happen, I think it would be good for you to have a heart-to-heart with your uncle. Also, you might come "armed" with information about a particular nearby hospice, so that both of you know exactly what care might be offered.

[RN CHPN]

Assure your uncle that your aunt does not have to be "placed in a hospice". Hospice is a philosophy of care, not a place, meaning hospice can provide a lot of support (physical/emotional/spritual/etc) right in a person's home.

This is a good place to start; getting hospice services in the house to help your uncle and aunt; and, as things progress (and I do understand they are very far progressed, and I'm sorry), they can offer more assistance -- some hospices have inpatient units, or can offer around-the-clock-care (called "continuous care" in times of serious crisis for a patient or caregiver), or supervise her care in a long-term facility.

I hope this info helps!

[rnboysmom]

The general public is so misinformed about hospice care as it exists today. Start by praising him for all of his hard work. Acknowledge his efforts and his wish to keep her home. Tell him that you have some knowledge about a service that can help him honor his wife's wishes and help him keep her at home. Remind him that the service is probably covered 100% under her Medicare benefit if she qualifies and that this services goals are THEIR goals.

We do not come into the home to change wishes, wants, desires, only to assist, as best we can with helping the family meet their goals for a peaceful passing. Hospice is probably the best opportunity he has to assist him in keeping her home! Good Luck!

[blondepenguin]

Absolutely agree with all of the above. Hospice can help him make the most of the time your aunt has left. Assure him, that his wishes and hers are the #1 priority of Hospice. Another thing you might want to do as the health care educated one here is to research the various Hospices in your area. One misunderstanding that most people have (including myself until I worked for Hospice) is that Hospice is one organization, when indeed it is many. I work for San Diego Hospice and Institute of Palliative Care, and here in San Diego, there are 17 other Hospices. Go on Yelp, or the internet and read what others are saying about Hospice services in your area, help your uncle choose the best one near you. Definitely reinforce to him that Hospice is not a place, but a form of caring that can help him keep her home and ease her passing without pain.