Hospice Observations

[Laurettas]

OK, I need to qualify a little bit. It isn't that they didn't talk about any respite. It was that the respite was for only two hours and the volunteers could only talk to the patient and not do any personal care. And as far as the personal care that is offered, I believe it is on a scheduled basis.

I am looking at the distinct possibility of having an unconscious husband who needs to have his diaper changed. He's a big guy. Am I going to be able to manage that by myself? Seems unlikely. So, I have to wait until the scheduled time for the personal care person to arrive to help? What if it is hours?

I know it sounds personal and kind of romantic to have the person stay at home and die with family present. That is what happened with my FIL and it was beautiful. However, he died in less than 24 hours after being released from ICU, there were 6 adults present besides my MIL to assist with any needs, etc. I am looking at the distinct possibility of being here by myself for all of this since no family members have offered to come and help and we don't know the people in this area well enough to come to help him get a diaper changed.

Each person has a different scenario and I believe that it is very important to look at your own situation very objectively to anticipate what your needs may be. Only then can the best decision be made.

[hannahw]

I know it sounds personal and kind of romantic to have the person stay at home and die with family present. That is what happened with my FIL and it was beautiful. However, he died in less than 24 hours after being released from ICU, there were 6 adults present besides my MIL to assist with any needs, etc. I am looking at the distinct possibility of being here by myself for all of this since no family members have offered to come and help and we don't know the people in this area well enough to come to help him get a diaper changed.

I worry about this sometimes too, although for different reasons. From a care standpoint, there's me and my family, so we're fortunate that none of us will be a lone caregiver. And one of the oncology nurses actually told me once, when my Dad was going through a rough patch, that she would come over and help out if we ever needed it. Not sure that's actually an ok thing - we've never had to take her up on it - but it was reassuring to know there was a bit of a safety net.

What I worry about with respect to dying at home is how it will impact my Mom, and to a lesser extent, me and my sibs. My parents have lived in the same house for decades. Will the house change in some ways if my Dad dies there? Will it be hard for my Mom to be in the room where my Dad dies? Will it be hard for me and my sibs? A friend of mine, her brother died in their family home when they were kids and the family moved within months because the memories in the house were overwhelming. I remember thinking about that quite a bit when it happened and maybe once or twice since. But now it comes to mind with more frequency.

If my Dad is unconscious for some period of time, will he even care/we aware of where he dies? It seems to me that more important than the where is the with who. People die alone all the time and it is what it is, but if it were me, I think my first priority would be to have loved ones with me. If it was in a hospital setting or a hospice facility, I think that would be ok. But who knows, really?

Laurettas, I think you're right to have the concerns you have. While there are obviously important reasons for wanting to die at home, there are factors that might make a different option better for everyone involved. You are only one person and while hospice can provide a lot of support, it may not be enough to ensure your husband's comfort and your piece of mind.

[surfingon]

Ashlee: I should have been more succinct in my statement about Medicare reimbursement for hospice care. Qualified hospice organizations accept any and all health insurance, not just Medicare.

Laurettas: The hospice yyou're dealing with still sounds fishy to me. I work with 2 different hospices; the really good one does not specify the length of time the volunterr is in the home based on some arbitrary time frame. The length of the stay is determined by the patient's and family's needs and is infinitely flexible, as is the number of times per week that the volunteer/volunteers come (within reasonable limits). The more profit-oriented hospice (while still okay but not great) specifies that the volunteer stays for 4 hours each visit. Most of the time, in my experience that is way too long and doesn't make any sense-- but sometimes the visit needs to be longer. An arbitrary time frame is much more about the hospice's convenience than it is about the patient and is an indicator of the kind of care you can expect (i.e., not exactly patient-centered).

While most hospices have parameters that separate volunteers for home health aides (and thereby limit the volunteer's hand-on care, like changing diapers), any well-trained hospice volunteer knows and must be prepared for the eventuality that they will undoubtedly at some point find themselves in a situation where they will have to change a diaper. They must be confident in their ability to do that gracefully, and poossibly more than once.

But bottom line is that you are absolutely right that each loved one of a cancer patient must decide on what end-of-life situation is best for them. It is possible for a good hospice team to make it possible for you to keep Jake at home and train you in how to change a diaper without hurting yourself. A good hospice team can train you to do tasks you thought impossible, and give you strong confidence in their support. But that may not be the best path for you or for Jake. It is certainly a very different scenario if your loved one is unconscious. That would be a strong indicator that an inpatient hospice home might be a much better choice. Even the most determined caregiver will burn out trying to give sustained round-the-clock care to their loved one singlehandedly, thereby jeopardizing the goal of a peaceful death for all involved.

Your heart will lead you. Blessings on your journey (s),
Rachel

[Olivia]

I just went through this with my 84 year old mother. She decided to not have any more chemo in mid June when we met with her onc to review scans.
She'd had 3 cancers in the last 3 years (colon 3b, non-Hodgkins lymphoma and small intestine), with 2 resections, Folfox 2x, biopsy and radiation for one of the lymphoma nodes, colosotomy to avoid a tumor between her colon and bladder, not to mention a bout of shingles on her face and in her eye. Her scans showed shrinkage of some nodes, growth of others, and a 90x50 lesion on her mesentery which had doubled in size from her previous scan in January. She still had other chemo options except for being Kras mutant, but said "enough is enough."

She had recovered well from her surgeries and tolerated chemo with few side affects. Lived a vibrant independent life. Even learned to manage her colostomy very well on her own. But it was clear she had lost a lot of weight, was weak, and more continually in pain and not able to eat or drink much at a time.
I thought she still had a few more weeks to months living at home before moving to a care facility (her wish) near my sister's. Because her onc had qualified her for hospice care I contacted a local service that came immediately to provide her with pain management, meds, chaplain and social work services ( I was back home in SF).

What I found out in my Hospice research for my Mother is that in Southern California I just couldn't find "in patient" type places. Yes, lots of service groups that will come to your home or to a skilled nursing or care facility, but not dedicated Hospice facilities. The hospitals that seem to offer this want a patient for only a few days. I'd read Surfingon's lovely informative book more than a year ago in preparation for the inevitable. Remembered Gaelen's desire to be in a Hospice facility and not at home which so resonated with my Mother's wishes, even though for Gaelen it didn't work out.

My Mother decided "it was time to go" when she couldn't empty the dishwasher by herself without having to take a nap afterwards. It was only 2 weeks after the meeting with her onc.
I moved her into a Catholic not-for profit skilled nursing facility near my sister's and the rest of our family. She only got admitted because she was not coming in as a Medicare patient (coming in directly from the hospital), but as a "full pay." We did not need further Hospice services as this place provided the "end of life comfort care." We used one of the referral doctors for her care as we felt we didn't need the services of her onc any longer. Hers was a relatively simple and straightforward case: increasing obstruction, intestinal cancer with no liver, lung or brain involvement, only lymph nodes.
She had lots of company through her last days and was provided with good, loving care and all the counseling she wanted.
I have often read that families wait until a few days before "the end" before contacting Hospice. Even though technically my Mother was not in a Hospice facility eventually she ended up needing round the clock care which we, her family, felt unqualified to give. It was a blessing that she could be in a place of comfort for her last 8 1/2 weeks.
So, Ashlee, I think you are on the right track for you........to be able to go to a place where you will be well taken care of that is close to friends that can visit with you.
....But wishing that won't be for eons and eons!!!!

[Ashlee H.]

Olivia - Thanks for sharing your mom's story. I'm glad I started my research before I was in immediate need of any of this. I was really surprised of the lack of Hospice facilities in my area. The hospital or a Care Facility seems to be the best option for me. But everyone has their own situation - this is just the one that will work for me and my needs and wants. Now I can tell my main friends about my decision so they won't be concerned they are not doing what is best for me.
I thank everyone for their input here. Not an easy subject to discuss, but a necessary subject.

[Ashlee H.]

Ok, I know I was going to stop researching this....but decided to finally call the Hospice number I had been given. They were very helpful. Bottom line, for my area, if you have Medicare you are set. If you live in Canada, you are set. However, because I'm not 65, if I want to go to a care facility to die, it will be private pay. Oh well, can't take the money with me. I'm beginning to understand what Gaelen must have been going through with her research. Who thought dying would be so difficult? So, I guess the best thing is to discuss this with my friends and let them know I'm fine with anything. Still hoping my ONC will just let me die at the hospital. Just irks me to have to shell out $6,000+ a month just to have a bed in which I can take my last breath. That money could be put to some good use if given to a charity or family.

[Mojo]

Our local home nursing offers palliative care before hospice, thisis where you can still see drs and chemo.

[horizon]

I was with my grandmother when she died in a hospice facility and I have nothing but praise for them. She had her own room, they played music for her, brought in therapy dogs, etc etc. Everything they did was to ensure she was as comfortable as possible.

[Ashlee H.]

Horizon - that is exactly what I was hoping to find - but just none in my area. I'm glad there are great ones out there, but wish some would come to Southern California.

[horizon]

Horizon - that is exactly what I was hoping to find - but just none in my area. I'm glad there are great ones out there, but wish some would come to Southern California.

I'm stunned you're having problems finding a hospice like that in Southern Cally. I would understand if you lived in the middle of nowhere. It upsets me that you're having this extra stress on top of everything that your going through.

[pollo65]

Ashlee, I live in N.california and when my mom died it was at the local hospice, the problem is that if she had taken more than 10 days to die we would have had to transfer her to a hospital and then back to hospice. The hospice staff was wonderful, my mom had been very agitated in the hospital(noise, lights and other patient's visitor's) but became quiet after she was bathed, her hair combed and the chaplain came to sing to her. I was with her at the end (after her priest anointed her) I told her she could go and it took her about 10 minutes before respirations and heart stopped. It was a good experience but with a 10 day limit I believe it would not work for me. While I still worked at the local hospital, hospice could be up to 6 months but I believe that no longer exists. I, like you keep looking for something better but suspect that I will have to settle for in-home hospice because the new hospice facilities seem to havw a monetary bottom line.
pollo 65

[lifeisajourney]

I have been referred to hospice. Even had them come for consultation.....I dont feel good about signing yet...my onc would be dr. I feel I am giving up control....mostly I am upset that we have to make these decisions when sick and older......sure we could self pay but we are not rich and that would be a problem eventually....my husband would have minimum help, kids are far and have responsibilities....respite is 5 days at 5 per cent, just a lot to think about,,,,did you know medicare pays for 1 consult.......too much to deal with really......good luck to all, we have made no decision......

[las]

Wow,
There is a lot here. I just went thru this experience and I interview 2 companies and then went to visit the in patient facilities and ended up choosing the one where I like the type of people. They both offered the same type of service and it sound much like what Lauretta is saying. The difference with Kevin's insurance was really different than I think most. Kevin had an insurance policy that had a compassionate care program attached to it. Tis meant he could go on hospice and could still continue to actively fight his cancer if he chose to do so, both hospice places told us no, but our case manager at Aetna augured and said yes he can we cover it. It wasn't till the case manager got on the phone with the hospice facility we chose and explained to them what the compassionate care program was. So, Kevin could go on hospice and continue chemo or do clinical trial, or see a pain management doctor at md Anderson as long as he wanted to under the care of hospice.

I knew he had excellent insurance and that was the reason I never married him till the end, because he would have been dropped from the inurance he was on. Bottom line is hospice came out twice a week to bathe, nurse came out once a week to check on him, we were offered volunteers to come sit with him for 2 to 3 hrs if we needed it but they were not skilled in any way to care or administer meds if kevin needed them. So to me that was no use at all. Towards the end, meaning the day the nurse aide that came to bathe Kevin on Monday saw signs of skin changing colors and she called an RN to come that day and from then I believe we had someone meaning a nurse come out everyday, which lasted about a week if I can remember correctly. It's a blur now and I just went thru it. The nurse only was out for about an hour or two. Most of the time was spent writing up what she observed etc. Kevin had diabeties as well and neither hospice company was trained in diabeties like I felt they should be and neither company knew how to change illeostomy bags etc. it was all up to me, they would help me hold him, but didn't know how to do it, which I thought was totally wrong. I still like the nurses and everyone I meet with who I chose, but felt that the hospice companies should employ or train their RN 's in these areas as Kevin can't be the first one with a bag or diabeties. I was there with his mother and brother till the end, the 4 of us did it all, night and day. We had to set out alarms every 2 hours and get up to check on him and give the morphine and Ativan.

I even was told if there was a crisis situation with pain that they would send a nurse out for 72 hrs to stay with me 24/7 to get the pain under control, but when that time came they told me it was not available because they were under staffed. They wanted to take him to the inpatient unit and his sister was hot about this and said we have done what you told us to do the day before and now your telling us we didn't do our job and you want to take him, well Kevin wanted to die at home, so his sister said just tell us what to do more and we are on it. So they did and within once strong dose of morphine and an Ativan Kevin was comfortable and we continued on that path. He died 2 days later.

Lisa

[Ashlee H.]

This is all such a nightmare. How is hospice handled outside the US? I've known people on Medicare and hospice who never had an issue. Why, because we are younger terminal patients are there not many options for us? Most people have family or great friends/neighbors, but what about those with no one? Who fights for them in their last days. I just hate that not only do we struggle to fight this DX, but we are having to fight issues until our last breath. There seems to be more organization in Hospice over the past few years, and the people I've spoken to who are involved in it have been great. Seems like a lot of it comes down to money again. If you have money, you can die anyway you want. If you don't, you get thrown around by the red tape and paperwork and just hope your last days are pain free.

[surfingon]

Ashlee,

I'd like to express my gratitude for your determined quest for answers to your hospice questions-- because I am effectively in the same boat as you, with medical insurance, but living alone and having no friends whom I could ask to change my diaper at the end of my life. Your questions pushed me to
pursue my own line of research, which led me to some answers that I needed to know but did not really want to acknowledge.

Here is the straight scoop, right out of the "Medicare Hospice Benefits" official booklet:
“Medicare does not cover room and board if you live in a nursing home or a hospice inpatient facility."

Can't be much more straightforward than that. So how to match that with what the hospice you spoke to told you? Well, Medicare will pay for "a short period of inpatient or respite care" IF it is ordered by the hospice that is caring for you. "Short" is basically 5 days-- but it seems that many hospices have figured outways to creatively label in order to stretch that time frame by a few days. But what you were told, that you'd be "set" if you had Medicare-- it's just not true. I suspect that the hospice you were speaking with specializes in creative labeling.

Bottom line for you and me as women living alone, (age does not matter-- my Medicare will not pay for me to be in a hospice house and your Blue Cross may or may not-- but probably not) as a hospice house webpage explains: "Medicare does not pay for room and board." When put in those terms, it does make sense, I must admit. This is the primary reason that hospice care in the home is such a deal-- the government recognizes that it it dramatically cheaper to care for someone in their home than it is in the hospital.

I've queried the executive director of our hospice, which is in the preliminary stages of building an inpatient hospice house, and will talk to the clincal director of nursing as well-- because I am not at all sure that the general public from whom much of the support for the hospice house will come understands that they and their loved ones will likely not receive much benefit from this unit. I certainly was deluded about how I would benefit. If any substantative details come from those conversations, I'll report back.

As far as your thoughts about wanting to die in the hospital: hospitals are NOT nice places to die. Hospital personnel are NOT trained to deal with dying patients-- and neither are the vast majority of doctors. That is the big difference bewtween conventioanl medical care and hospice care; hospitals are focused on curing or making better, and are, consequently, death-averse. The hsopital environment is the antithesis of the desired peace and calm at the end of life. Hospital staff are trained to "do", not to "be"-- one of the biggest challenges in training a new hospice nurse is to get them to the point where they understand that "doing" very often just gets in the way of a peaceful death.

It has been my experience that nursing homes/care facilities are often not well informed about care of the dying patient. Of course they're great at changing diapers, but the "doing" is still generally emphasized over just being present. I would suggest that if you do find that you will be entering such a facility, that you might want to consider having a hospice team on your case as well. Most hospices have arrangements with nursing home/care facilities in their area so that patients can benefit from both modalities.

Given that, as a recent Time Magazine article headlined "Living Alone Is The New Norm" (the article went on to state that the majority of those living alone are women aged 35-64), the current paradigm does not work for us in our dying.

With frevent hope that that will change,
Rachel