Expert: Mary Gordon - 11/26/2011

Question
Hi Mary,
My mom is 84 and has lived at a dementia skilled nursing home for a year. My question is how and when do I ask about hospice. I feel like even posing the question makes it seem like I am rushing toward the inevitable end for my mom. These last few months, she has declined so much that I think there's more wrong with her than right and my mom and our family will benefit from hospice. I know the doctor has to request it or approve it, but when is the appropriate time to ask about it? I don't want to wait until she's in a coma and obviously dying.

Some background, if that would be helpful: She is wheelchair bound, and up until a month ago could transfer with assistance to bed/toilet. She feeds herself but needs help with everything else. Most of the time she says she is not hungry and eats half of what she ate at a meal in August. Her cognitive level changes like the weather. She knows family and staff members, but never knows what room she's in or how she got there.

In late September she had to go to a wound clinic for a small abrasion (rubbed calf on wheel chair) that wouldn't heal. It's a really long story of what's happened since then, but most importantly she now has a serious open wound on the top of her foot--exposed tendon and oozing (caused my mismanaged wound care wrapping), that when cultured revealed three bacterial infections which they are trying to get a handle on. She also inhales liquids which has caused very nasty coughing. And she has urinary infections, one after the other, which causes great confusion and delusions.

She spent ten days of October in the hospital because of the wound.

All I see is a steady decline. Yesterday, we could not wake her up for longer than a minute when we visited for Thanksgiving dinner. Eventually, she woke up long enough to eat lunch and then went back to sleep. The nurse said she had not taken any medications and was not "drugged" with pain meds or Serequel. I've noticed that she sleeps more and more and more. But she may experience agitation with Sundowning that keeps her awake at night.

The foot wound is very bad. My mother is not a diabetic, but the wounds on her legs and feet now resemble those kinds of ulcers. Her calves are extremely swollen. No one has mentioned CHF but she has a history of COPD.

It's a grim picture. I would really like the kind of emotional help and medical comfort hospice can provide her. I think she needs help with this decline. She often says, "I wish this was all over and I'm tired of all this nonsense." Who can blame her!

The staff and doctors do not seem to have much concern (except about the foot wound), and I'm sure they see this all the time. Where as the family has never seen this kind of decline. I am very worried and fear the worst.

Do you have any guidelines for when the family should request that the doctor consider adding hospice?
thank you
deb

Answer
Hi Deb, I think it's time for the conversation regarding a hospice care program. I wouldn't feel guilty about this - most people wait too long to start the conversation - with the end result that patients and their families often don't get full benefit from the programs (i.e. too often a person enters hospice when they are in dire condition and close to the end, rather than at an earlier stage when the supports can ease the journey).

Most progressive dementias is considered a terminal illness, she is experiencing chronic infections over and over again and poor healing, she is declining, her mobility is gone, she is losing interest in food - (and I don't doubt, losing weight  as a consequence)- sleeping more and more - all of these are signs that her lifespan is limited. Now is a good time. Her other health complications like COPD will make her very susceptible to the kind of illnesses that can easily and rapidly carry her off, and and it sounds like her immune system is compromised. I hear your distress. Have the conversation the doctor as soon as possible. I'm sure the answer will be positive and a relief for all of you.

I really feel for you. We went through this with my mother in law. Many family members stopped visiting because they couldn't bear to see her in such dreadful condition as things got worse and worse - we would literally find them weeping in hallway.  I know how heart breaking to be unable to imagine things worse than they are, and then find out they can get worse. It's so stressful not to be able to help in meaningful ways, but I suspect you will find a good hospice program very supportive and compassionate for all involved.

Thinking of you.

Mary