Hospice care decisions - what do you wish you had known?
July 23, 2013 2:09 PM   Subscribe

Our family is dealing with hospice decisions and not sure what to do for the best. Maybe you can help.

A close relative has to to decide whether to go into a dedicated hospice facility or have hospice care at home.

We are in the UK. The elderly spouse is the only local relative, the house is small and with no downstairs bathroom, and the patient is wheelchair bound. On the plus side, everyone involved understands the diagnosis and is on board with the move to hospice care of some kind.

We have an occupational therapist who will come and assess the adaptations that can be made to facilitate home hospice care.

If you've dealt with a similar situation, is there anything you wish you'd known at this point? Any questions you wish you had asked? Have you made this decision one way or the other and wished you made a different one?
posted by emilyw to Human Relations (14 answers total) 8 users marked this as a favorite
Best answer: Questions I would want to ask:
* For the medical team - As the illness progresses, how will my abilities change and what help can we get to manage that?
* For the patient and their spouse - How much personal care (washing, changing incontinence pads, dressing, wiping bottoms) is the elderly spouse physically capable of, and how much would they be happy to accept doing?
* What sort of respite is available if the decision is to stay at home?
* What sort of response time do the specialist nurses have? One good thing about hospices is that your pain medication can be changed very quickly if needed.
* If inpatient hospice care is the decision, what facilities are there for longer stay visitors? My dad died in a hospice attached to a hospital with very expensive parking and we were there about 12 hours a day for 5 weeks. We got a free parking space. His mother was able to sleep in the same room as him for the last three days.
* Physically how close is the hospice and can elderly spouse get there easily?

I have seen superb palliative care both in hospices and in home hospice services in the UK. I think either choice is good. The bottom line is whether your relative would prefer to die at home (with the familiarity and comfort that can give) or whether they would find it less of a worry to know that they don't have to rely on people coming out to see them, and on their elderly spouse to do the messy undignified stuff that comes with serious illness. My dad was vomiting faecal matter quite a lot and it was a relief that the cleaner could just come in and clean the carpet with the big cleaning machine rather than having to constantly scrub the floor at home. I'm sorry, I know it's not nice to think about these things, but that's the sort of thing bodies can do when they break down.

We didn't really get a choice because dad was diagnosed and deteriorated so quickly but the hospice was fantastic. I have also contributed to the care of people receiving hospice care at home and that has also been as good as it could be.
posted by kadia_a at 2:26 PM on July 23, 2013 [2 favorites]

Best answer: I was a hospice volunteer caregiver (I did home hospice and residential hospice volunteer work at different times) for several years and my reaction to having done both, bearing in mind that I am extremely picky about MY home and MY bed and having MY things around me, was that I would do residential in a heartbeat if it were me. This assumes that the environment is pleasant (but they normally are very pleasant). It relieves family of the 24/7 need to provide care and allows them to have exclusively quality time with their loved one, and does not preclude family from participating fully if they so desire.

Mainly this is going to depend on the attachment the patient has to the home environment, but I've also seen residential hospice that will allow patients to bring their own beds if they really want it, or to set up their rooms with all their own things, including in one instance I can think of a stereo and extensive music collection (and headphones so that other residents wouldn't be bothered). I've also seen people leave everything behind when they walked into residential hospice and pare down to the absolute minimum.

I would ask the hospices that you are interviewing what kind of flexibility they have with respect to personal belongings. Also ask whether the spouse may stay with the resident 100% of the time, or at least as much as they want (we've had spouses move in for the duration and other spouses who visited daily and then moved in Friday night and left Monday morning).

If your relative thrives on neat schedules, ask the hospices how good they are at keeping mealtimes consistent. If your relative is more strongly attached to having flexibility in their eating patterns (types of food or mealtimes), ask if that's possible (such as deciding they want lunch really early or that they want breakfast for dinner, that kind of thing). The residential hospice I last volunteered with was SO good at the latter, and HORRIBLE with the former. Volunteers were doing most of the cooking, so there was a different cook every night and meals got prepared and served at widely varying times. It drove some people absolutely bonkers, but other people really liked the variety and the food was always made with so much love that people who might otherwise be bothered by it often kind of fell in love with it.

Finally, home hospice can vary a lot. A big question in my mind if I were making this decision with elderly relatives would be whether an able-bodied caretaker would be available round the clock. If not, that will be a serious problem, but you have an OT coming to help you with that decision.

If you would like book recommendations on how to be with someone who is dying, or on hospice care in general, let me know and I will happily provide them. In the meantime, I'm holding you and your family in my heart.
posted by janey47 at 2:29 PM on July 23, 2013 [1 favorite]

One thing I learned is that truly no one knows how long the end will take. So you have to be prepared for it to be much quicker or much longer than expected.

One thing that I saw was that it takes a certain amount of physcial strength (plus some training) to be able to help someone move from a bed to wheelchair to commode or toilet and back again. Make sure that the family talks to the OT about what that involves if they won't have 24/7 professional care to help.
posted by metahawk at 2:30 PM on July 23, 2013 [3 favorites]

I am a hospice volunteer. I am associated with an organization with a top-notch dedicated facility. The decision of where to die is the most difficult one to make for many, many reasons, and as the end gets closer it is the cause of enormous stress during what should be a peaceful time.

First, if your relative is still able to leave the house, even in a wheelchair, I can't tell you how important it is to visit the facility beforehand. Ours is such a wonderful place and seeing it will take so much stress away from the decision. Keep in mind that many hospice patients do not want to face it, though, and be respectful of that decision.

Second, if your relative has a strong desire to die at home then those wishes should be respected. Although I would never do it because end of life care is so hard on the family. The last few days are usually very peaceful but the patient's needs still must be attended to by a family member. You are looking at 24/7 care for who knows how long. It's a long, tough road.
posted by raisingsand at 2:34 PM on July 23, 2013

Best answer: The elderly spouse is the only local relative

Hospice at home is really only feasible if there is close to 24/7 assistance from an able-bodied assistant. This is usually a combination of local family members, hospice workers, and possibly other home aids paid for by the state, your own insurance, or out of your own pockets. If the only local family member is an elderly spouse, it's just not feasible without full time professional care. Is that possible with this home hospice option?

The last thing you want is a fall involving both spouses. You could easily end up with a broken pelvis, hematomas, other broken bones, etc. And then both would require in-patient care and it's not always easy to keep them in the same room.
posted by barnone at 2:52 PM on July 23, 2013 [4 favorites]

Best answer: My wife was in hospice in the US where this decision isn't an option - there are no hospice facilities, only home and the hospital.

My wife asked to die at home, and that's where she was. I was her primary caregiver and it was physically, mentally, and emotionally exhausting. It was the hardest thing I've ever done. If I was dying and given this option, I'd be very likely to choose the facility, especially for the last weeks, just to give my family some respite. My wife was so delirious on pain medication during this time that I'm not sure if she actually knew where she was anyway, obviously that will vary by person.
posted by tylerkaraszewski at 2:59 PM on July 23, 2013 [6 favorites]

We've done both in our family and I would choose the hospice facility in almost any case, for reasons people have mentioned above.
posted by BibiRose at 3:08 PM on July 23, 2013

Best answer: My mother and I passionately agree that my grandfather's death at home was significantly more difficult and traumatic than my grandmother's in care.

Reason number one: the hospice facility had a motorized bathing sling. Massive massive difference in comfort when we were able to safely keep her clean.

Reason number two: not all deaths are a quiet peaceful sigh. Nobody was comfortable in the house afterwards.

Three: you probably only get one in-home carer at a time. There were at least four around at any given time in the facility. My mom and grandmother often felt awkward with a stranger in the house. In the facility there was a fold-out couch in her room, which was more or less hotel-like and not full of memories.

Four: what little medical equipment we brought into the house did some damage to walls and carpet. There was some other biological damage to the carpet and furniture as well.

Five: my grandparents had a pretty sturdy social circle of people from a generation where it was perfectly acceptable to ring doorbells and expect to be let inside and given refreshments just about any time from 7am-8pm. Visitors were only allowed in the hospice facility by pre-approval by the family.

In conclusion, my mother and I heartily agreed that the whole "I want to die at home" thing is kind of awful (and probably not what the patient had in mind anyway) and that none of us would do that to each other or ourselves.

This was in the US (and was a freestanding hospice facility, they do exist here), so we had to deal with insurance and medicare and long-term disability coverage. Hopefully you are not having to take that into consideration in the UK.
posted by Lyn Never at 3:17 PM on July 23, 2013 [6 favorites]

Best answer: The elderly spouse is the only local relative, the house is small and with no downstairs bathroom, and the patient is wheelchair bound.

Take the residential hospice care. If the patient is at home, that elderly spouse is still the person in charge of care 24 hours a day. "Hospice" is from the Latin for host. Let someone else carry the burden of hosting at the end. It is very, very heavy.
posted by DarlingBri at 5:16 PM on July 23, 2013 [3 favorites]

We do have actual hospice care facilities in the US in a number of areas. I happen to live in Florida where we have the largest private hospice organization in the US. Wonderful organization. Services are provided to anyone who needs them, regardless of whether or not the person/family can pay, has/does not have insurance, etc. Given the limitations mentioned regarding the current house, I would pick the hospice residential facility option were it me or my loved ones. 24/7 care is always preferable.

Also: hugs. Its not an easy thing.
posted by keptwench at 7:35 PM on July 23, 2013 [1 favorite]

Response by poster: OH YOU GUYS.

It has been so useful to hear these things without sugar coating and equivocation. The responses I favorited are the ones I pasted parts of straight into an email to the relative and the spouse. Relative on the phone just now says "That was just exactly what we needed to know".

I am a little overawed that people on the internet took the time to dredge into what in many cases must be some very personal memories to help out me and my family. Thank you all so much. If you're ever near Sheffield come and hit me up for a beer.
posted by emilyw at 2:06 PM on July 24, 2013 [3 favorites]

After watching my mother die at home in hospice, I would totally choose a hospice facility if it were me going into hospice. I realize in some cases the "died peacefully surrounded by loved ones" does really happen, but as tylerkaraszewski and Lyn Never put it very aptly, the end can be extremely long, exhausting and horrifying. I think my mother envisioned it would be lovely and peaceful, but it was anything but that.

If you do opt for home hospice, make sure they do follow-up care with the family post-death. I think my Dad made the decision that we were all "okay" and me and my sibs were certainly very not okay and really could have used the follow-up counseling that my father decided to deny us.

On the plus side, I will always remember the awesome hospice nurse who took me outside and talked to me when I couldn't bear to be in the house anymore and reassured me that it wasn't my fault that I was so terrifed.
posted by Wuggie Norple at 5:07 PM on July 24, 2013 [2 favorites]

I have been through this sort of difficult situation recently -- it is very tough and you should take it easy on yourself, whatever decision you make. Send Memail if you need to vent to someone who will understand at any point and I will be glad to listen. It was extremely mentally and physically exhausting to care for my dad at the end, although I do not regret it at all. But I don't know if we could have done it if my mom weren't a former nurse and without a few of us who could support him physically (and each other mentally). Good luck. There are very nice people working in hospice and I'm sure you will find relief in their help.
posted by theredpen at 5:50 PM on July 24, 2013

Response by poster: Elderly relative died (reasonably) peacefully yesterday in a little dedicated elderly care hospital. The staff were marvellous and it's very clear that she was in the best possible place.
posted by emilyw at 11:49 AM on September 26, 2013 [5 favorites]

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