Personal advice/experiences with HOSPICE- Post here

[Treebywater]

Thanks for doing this Frank! I wonder if some of us who have had some experience with Hospice might be able to add some thoughts?

[Frank Lamb]

I think it would be very helpful if others posted their experiances both good and bad in this forum so that those interested can learn from others first hand.

I have not had to shop for hospice yet so I am getting this information from the world wide web.Meaning this info is the opinion of one group of people.

[Littlegirl]

We have not had to call in hospice yet, but while at the hospital waiting for one of mom's procedures my sister (who is a RN) was chatting with the chaplan there about several things. The chaplan stated that most people wait too long before calling in hospice and that these services should be used much earlier. I know that hospice is a bit different for every location so I would say look into it long before you expect you'll need it, just so you know your options for when that time comes.

Karen

[babesdaughter]

I have to say, that if it had not been for the incredible hospice team that we had when my Mom was dying, I don't know if I would have made it. I know I am a better person for having worked with them and watched them care for my Mom.

We were fortunate to have a case manager that really listened....if I didn't like the way a cna treated my Mom, she didn't come back.....if I had questions about meds or whatever, they found or had the answers....the nurse and social worker totally prepared my Mom for every step of the journey. I'm sure things were still frightening for her, but they were not unexpected. I remember the night before she died, I was trying to help her on to the commode and her legs were just like jelly....she just looked at me and said, "Kim (the nurse) said this would happen." It was very matter of fact and just part of it....she knew it was coming.

The aftercare was probably one of the most important things for me, too....I went through the grief recovery group with my daughter and it was such a healing process.

I think the most important thing is to make sure they know what you want, what you expect, what you are feeling....communication is absolutely critical.

[glo]

My recent experience with hospice was very positive. My mother who was 91 and had been relatively healthy had to go in the hospital because of some confusion and difficulty expressing her thoughts. No positive diagnosis, but possibly a slight stroke. She was discharged and I flew to MD and spent two weeks with her in her apartment - my four sisters and two brothers were in and out a lot during that two weeks and we all had a great visit.

Within two days after I flew back to CA, she was again in the hospital. Still no clear diagnosis, despite extensive tests, but then she came down with an antibiotic resistant uterine tract infection - a form of staph. Because of the IV meds, she wasn't able to go home at discharge, but had to enter a skilled nursing home temporarily. After only a few days there, she developed extreme shortness of breath and harsh breathing - the nursing home took her to ER and she was now diagnosed with congestive heart disease and admitted to the hospital.

Within just a few days, the cardiac doctors told us that her kidneys were shutting down and she was dying. By the time I got a flight back there, she was already unresponsive. The next day they moved her to the Hospice unit of the hospital. I was amazed!

There were four patient rooms in the hospice wing - large rooms - mom's room had a huge comfy recliner chair, a table and three or four chairs, two other armchairs, and they brought in a cot - and of course the standard hospital room TV. This all was wonderful, but then we discovered the two rooms at the end of the hall. Luckily for us, my mom's room was next to them. One room had a refrigerator, microwave, large table and chairs, and a table with a phone. The other room had a sofa that was actually three joined recliners, a love seat that was two recliners, and a separate recliner chair, plus a TV, a desk, and oh, joy, a computer with internet access. All of this was furnished for the family's comfort. Plus they sent up food a couple of times a day for however many people were there at the time. And my mom was on medicare! Wow! We didn't get billed a penny for any of those services.

For the three days until she died, there were never less than two of us in her room or next door. Many, many times there were as many as eight of us there. We took turns going home to shower - that was about it. Nurses did whatever we as the family wanted. If we said don't take vitals, they didn't - if we asked for her to be repositioned or cleaned up, they did that. They showed up at least every three hours and asked what we wanted or needed. Plus, of course, they administered the morphine and Ativan she was on. We could never have been as much together as a family if we had taken her home, because her apartment was too small. Plus being in the hospital meant that the professionals were always on call.

I realize this isn't very helpful as far as shopping for a hospice because it just happened to be available at the hospital she was already in. But I just wanted to say that it was a service that we very much appreciated. Having gone through a vigil twice before at hospitals offering only hard waiting room chairs, this place was a dream come true.

I'll definitely be donating money to the unit that provided the service.

[Treebywater]

Our experience was really a mixed bag. I think the thing that suprised me most was how SHORT of a ride it was. I guess I had pictures in my head of movies and experiences of others where there were weeks or months left and there was good quality time left to be had. So I guess my first little bit of advice is--Don't assume that you have time. I very much regret things that didn't get said or done with my Mom even though we supposedly had all this time to prepare.

We had a wonderful nurse who took the lead with our case. We all really felt comfortable with her, but we were working with an organization covering several counties so our contacts with her were more limited than I'd expected. She was, however, very easily reached by phone.

One thing that I thought was very helpful, if still overwhelming, was the teaching that happened. They really did a good job of preparing us for 'what happened' next, even though it went fast. The step by step how-tos and practical advice given was so appreciated--especially when it came to transfers. They also offered us wonderful advice as to how to make Mom feel comfortable and loved even when she was in her semi-comatose state.

I think one thing that I didn't feel (and still don't) feel totally at peace with was the drug monitoring. Because our nurse Laura only came about twice a week, and Mom was only signed on for six days before she died, WE were the ones who were monitoring what was happening with the drugs and hre reactions to them. It's such a guessing game knowing if the reactions your loved one is experiencing are cancer-related, 'the process' related, or drug related. I am not 100% convinced that some of Mom's nonresponsiveness was not due to the drugs, despite us being reassured that it was 'the disease' or 'the process.'. I just have some very unsettled feelings about that whole aspect. Advice I'd give there: Ask lots of questions. And if it doesn't feel right, find out why.

Our CNA was fabulous. We only had one, and I really just loved her. She did a wonderful job of doing the practical things like washing Mom's hair and bathing her--things that just made Mom feel good and still human in all that was happening. And she was very gentle with us. The practical help that was offered was invaluable and really freed us up to spend quality time with Mom instead of doing the practical tasks that had to be done. She also did an absolutely wonderful job of teaching us how to help. I remember having Carolyn in one arm, and a washcloth in the other learning how to gently bathe Mom, and she was patient with my dual role at the time. Again I say our CNA was fabulous.

All that said, I think another thing that I was unprepared for was the amount of time we still had alone... The number of right-now decisions that we had to make by ourselves. Now, again, this could be because our service provided care for several counties. But the little minute by minute things drove me nuts. Most of our days, even when things were happening so quickly were spent alone. The couple of hourse that we had with the hospice folks just couldn't prepare us for everything, and I felt a lot of uncertainty with that. Even just knowing--does that look mean pain? Or... trying to get through repositioning transfers smoothly. Those things were so scary to do alone.

For family members especially, I will say that the nurse who came immediately when I called to let them know that Mom was gone was incredible, and her intuitive support for us was incredible. She was the on-call nurse and not our case manager so we didn't know her, but she was fabulous and walked us through things that come immediately after passing with such grace, and graciousness.

As I already mentioned our aftercare was really spotty. That could have been as much my/our fault as their's though. We were given a flier in the beginning about a grief support group... But I don't remember being told the time or place. I think it would have been easier had someone contacted me and said, "If you feel comfortable doing so, we invite you to come try this group." And I would have felt more supported had we seen or heard from someone with the organization after Mom's death past the form letter sympathy cards that we got.

All that said--my greatest advice overall is--if at all possible shop around a bit. If your insurance will cover more than one provider, find the place that fits your needs. As I've mentioned in other posts, this hospice wouldn't even consent to a blood transfusion should Mom have needed one, without her signing off the program(though she was able to sign right back on afterward). That made me so uncomfortable. BUT there are others (most recently I've seen the one out here where I am living now) that will even allow you to keep pursuing palliative treatment. So... look into your options as quickly as possible. I know when hospice is called in, time is precious and that's difficult, so it might be something to think about even when things aren't to the point that it is a need.

Follow your gut. If something doesn't seem right. If a person doesn't click right to you, say something.

Be proactive--call if you have questions, even if it sounds silly. This organization did a great job of getting back to us any time we had questions. As Mom's decline became more pronounced (and as I said that happened to us very quickly), I found myself calling a lot.

Remember that even hopsice organizations are like anything else--there will be all levels of quality and some might just not fit you. Ours fit us, "ok." It was a help, but not the tremendous relief that I guess I had come to expect by the frequent comments that, "Hospice folks are angels. They will help you sooo much." Maybe my expectations were just too high. I will say that our experience was overall good. Just not as relieving as I expected and hoped for.

So... that's my experience.

[Treebywater]

One more thing to add--this is thinking of the hospice care husband's grandfather received--if there is a nursing home/hospice overlap (The patient is a hospice patient being cared for in a nursing home or assisted living facility of hospital), especially at first you may go throrugh the, "he's not our patient" bit. SPEAK UP if that happens! Say--I know there is some trasnsitioning taking place but he/she needs SOMEONE To care for him NOW. That was a snag we hit with Grandpa and it really disappointed me.

[RandyW]

I can't contribute because Deb never made it to that stage in her care. Sorry, But this is a great idea and glad to hear so many positive things. May help with elderly parents but Hooe Don't ever have to. Thanks for the time and info.

[Linda661]

I am going through interviewing a hospice organization now, since the doctor ordered a hospice consult for my mom. Frank's info. is very useful.

My prior experience with hospice was only about 4 days with my dad and it was sooooo fast and furious and scary at one point....but I have learned more since then and I am trying to get the questions out on the table so mom isn't scared to choose that option if she wants to. Also, my experience revolves around Medicare as the insurer: Hospice may support differently on other insurance(?)

Hospice replaces Medicare Part A hospitalization benefit. When signed on to hospice, a patient gives up receiving any other Medicare Part A or Part B benefit that relates to the condition/disease for which hospice was called in to support. In other words, there is no more pursuit of IV chemo, radiation, blood transfusions, etc. at the cancer center or in the hospital for "curing" the condition -- hospice manages the symptoms and a DNR is assumed for complications arising from the disease progression. The patient is not sent to the ER for pneumonia concerns, for example, hospice manages it. Hospice will work with the onc. for pallative therapy, such as radiation, for pain management needs. Hospice will send the patient to the hospital for unrelated issues from the disease, such as breaking a limb or some other unrelated condition to the disease which hospice was called in to manage. Hospice will not cover other normal doctor desires such as dentists, eye doctors, dermatologists, etc. (I am not sure that Medicare Part B will either if on hospice, still checking).

Medications related to pain management are covered under the hospice benefit; hospice also takes over equipment needs such as oxygen. Hospice will not cover "maintenance" medications such as blood pressure, heart meds, etc. -- only pain management (this one I am still investigating....I thought they covered all meds with my dad).

Hospice adds a lot of quality of life support and has the ability to "cut through the red tape garbage" as a patient's condition and medication needs change. They can do this much faster than the patient and the family can on their own. They can add an extra support to patient needs such as bathing, dressing, eating, etc. (though it's not every day) and provide PT/OT therapy support as needed. Extensive counseling and spiritual support is offered to the patient and the family as well.

Hospice can also add support, through volunteer services (trained on how to safely do things around a failing patient -- like reduced mobility), to provide life enhancement activities when the family cannot: for example, if/when strong enough to safely transport, hospice volunteers could take mom on a day trip home or to see friends when I cannot do it. Everything revolves around the patient, the patient's family to provide quality of life, while managing the symptoms associated the progression of the disease in a natural and respectful fashion.

Our particular hospice is unclear about accepting the idea of the newer cancer drugs such as Tarceva while on a hospice benefit: it's a policy thing that the hospice world hasn't really come to terms with well yet -- the hospice RN is supposed to be checking with their medical director on this issue while I investigate the Tarceva option with mom's onc. The cancer drugs taken in pill form at home are a "loophole" at the moment, if you will.

The patient can cancel hospice at anytime and go back on at a later time; and while I thought you could only be on hospice for 6 months (period), the laws are such that there are ways to receive the hospice benefit for much longer periods of time if the patient requires it -- important to know since we all know what a rollercoaster this dx can be and that whatever the docs. think will happen ain't necessarily so.

Some of the things that concerned me the first time around are similar to Treebywater's experience. I also had to oversee the meds and how my dad reacted to them....even how they were being administered by the nursing home staff -- I found that hospice had not adequately communicated with the nursing home staff how to administer the meds suitable to my dad's condition to insure his comfort (that was really upsetting to me, but dad's progression was so fast and stumped everyone along the way). I also was distressed at the hospice refusal to administer IV hydration in my dad's case at one point -- fortunately, my dad was coherent enough to say he didn't want the IV fluids so that was enough for me to honor his wishes. I have since learned that there is a point in the process for the patient where hydration measures like that just make things worse for the patient -- we didn't have the time to be trained the first time around by hospice on those types of things....sounds scary, and it scared my mom big-time, but I assure you it does not cause suffering like we would think. My interview with this current organization indicates that IV hydration is offered until such point that it is not in the best interest of the patient and their comfort.

There's more, but this is getting long for now.

Linda

[Tom K]

Great idea Frank. This will be very helpful for those that will need the information. There is a lot of hospice information on the Web but there is know substitute for real world experiences.

[Frank Lamb]

Linda,Thank you.That was very informative and will surely help many people here.Please let us know as you are able how this pans out for all of you in the future.

[sues]

I have just recently been involved w/ hospice. I had to do WBR after radiation on the primary tumor in the lung/ and chemo. When the rad onc.thought I needed WBR my oncologist contacted hospice. They were at my door the next day. At least the nurse was. She explained how the system works. (Complicated ) What she was really there for was to see if I really needed hospice. As far as I was concerned I didn't. We sat and VISITED for about an hour. she went through the process for me and my family. Explained that if ANY of us needed anything she would be there in a heartbeat.

At this point I don't need cna services -little unsteady on my feet - she got me an electric wheel chair for home use.A few days later my social worker came to visit . I felt as comfortable with her as I did with the nurse. THey explained that they will help me and my family through this journey. I explained that my biggest concern is my husband ( he's in denial ) although he's been with me for every treatment and every dr's appt - he's heard the dx - we've cried together -I've helped him with plans for him when I'm gone - but it's still "when you're better ". I explained this to the nurse and she told me that the first day she met him she had him pegged as one they need to be with. He may surprise everyone and deal well - we've been discussing this whole thing for 13 moths so far.

The nurse told me that hospice will pay 95% of persciptions if the script is illness related. Now I'm in IOWA . I assume each state has different rules and regulations - we also have partial persciption coverage through our insurance,

She told me it doesn't matter. I keep forgetting to find out how that works. I'll try to remember Thursday. I haven't had a lot of experience with hospice so far - but from what I've seen and heard - they'll be my best bet - for me and the family. By the way the nurse told me that at ANY time we were unhappy with our care or a worker, all we have to do is tell them.

GOD BLESS

sue

[Frank Lamb]

Sue,thank you for sharing this with us.As I mentioned before this type of experience will be a tremendous help to others.

I think most all of us go thru this fight by researching words,treatments,trials,new tx's,and anything or everything we can do to get better.Very few of us bother to research hospice care and when and if that time comes we are at somewhat of a loss again.

Please keep us updated as best you are able.

[gerbil runner]

Hi, all. I read often but post seldom. Had to chime in on this one.

Some hospice organizations can provide help with bathing, coordinating medications, cna monitoring and the like BEFORE the patient is actually on a hospice program. The program was called "home palliative care" in our case, and did not depend upon any "expected" life span. The patient can also still seek aggressive treatment. If your insurance will cover such care, find a hospice that offers it!

Also, a few hospices have their own inpatient facilities. Unless you have lots of reliable help from family and friends, find one. It's awful for a hospice patient to have to spend the last days in a hospital or nursing home which does not have a specific hospice program. Inpatient hospice should have no visiting hour restrictions, provide a more home-like setting for family members, and cater to the patient as much as possible.

My great-aunt just passed away in a nursing home because my uncle couldn't care for her when she could no longer walk. The constant shifting back and forth for visiting, the confusion over who was in charge, the pressure on my poor aunt to eat when she clearly no longer could...a better facility would have made it so much easier.

Not everyone will be able to find a hospice with these services, but look for them if you can.

[NancyT]

I had two very different experiences with Hospice for my Dad. First, he lived in a small town (2 hours with only 1 Hospice program. They would not allow my Dad in their program unless someone was with him 24hr., a day. I found this unusual, I am a nurse, my dad was living in a assisted living center and we had them checking on my dad when one of us could not be there. I then went out of town and found a Hospice that would care for my Dad. It was quite mixed for us. They were limited on their pharmacy and would only use cetain meds. My Dad liked the nurses that came but as he started to get worse, I found them trying to talk me into a nursing home. I was VERY fortunate that a Hospice House opened where I live 2 years ago. The difficulty was the timing. Medicare only pays for a very limited end of life stay(I am not sure of the exact amount of days). It is possible to pay for the Hospice house but extremely expensive. I was able to have my Dad admitted to the hospice house(Bruns House, Alamo, Ca).

There are private rooms ( I think and I have never seen such loving care even in my 25 years as a nurse. My Dad's last 10 days were peaceful,pain free, this was such a great relief to him and all his medical needs were met as things arose. Our family was allowed 24hrs a day with no limits and tremendous support from the entire staff. I cannot express enough the peace our entire family found in the care my Dad received. My Dad held my hand near the end and told me how wonderful each an every person there was and the great peace it brought him. I will be enternaly grateful.

NancyT

[NancyT]

I somehow lost a few words in my post. My Dad lived 2 hours from me. I believe the Hospice house has 8 private rooms. I have no idea how to correct my posts so I hope the info is clear. It was a great experience for us in the most diffcilt of times.

NancyT

[onlychild*]

I think this topic is a wonderful idea! My mom is only just 62 and only a week ago, or maybe 2 weeks now, did she finally go to a doctor after all my pleading. We were told she most likely has lung cancer due to a large tumor taking up 50% of her lung. The doctor right away referred us to Home Hospice Care as my mom turned down treatment and has no insurance. It has been very unnerving and scary. Am not even sure yet what hospice is supposed to do as I still help her with toileting, feeding, drinking, household jobs, etc. The hospice nurse has been over twice for about 15mins and keeps encouraging my mom to take morphine, but my mom is lucky right now as she is not in pain. Is this normal to be encouraged to take morphine when not experiencing pain? Does anyone have preferences to Home Hospice Care over Hospice Care at a Hospital, etc? Any advice for my Mom and I? Many many thanks as I feel quite lost with all of this being so new and my mom and I not having any other family. She's all that I have. Thank you.

[missyk]

I was scanning through and found Mom's post and decided to add a postscript to it.

Two months after her post hospice was called back in to help us when her treatments failed. They got all the equipment we might need brought in for her and helped us get it all set up. The nurses aides were exceptional and we never felt a bit "lost" at home.

Within a month of getting her set up and home, though, we began a struggle with her about *where* she wanted to be. With the brain mets starting to effect her cognitive abilities the decision ultimately came down to what my stepfather wanted. He chose to move her to the hospic home where they were able to monitor her better (she had to have video monitoring because they were having a terrible time keeping her in bed and she couldn't stand up on her own anymore! LOL) and where they could make sure her pain was under control.

The staff at the house was absolutely wonderful and became, in the time that Mom was there, to know us by name. When the time came for Mom to pass, they called us all to let us know it was time and we were all able to get to her with plenty of time. The offered and provided pastoral care, a memory book, yarn angels for the grandchildren (including the one I was pregnant with at the time) and were deeply moved at her passing. I guess that surprised me the most...to see tears in *their* eyes, too.

Mom was a HUGE believer in the use of Hospice and I know that because of them, her passing was greatly gentled.

(SueS's daughter)

[Larry's Wife]

This will be a long, rambling post. I apologize in advance.

On 01-26-08, Larry was admitted to ICU through the ER after having seizures. A doc affiliated with our onc doc's office recommended Hospice to me when he was brought to ICU. The next day, oldest daughter and I spoke with the Hospice social worker and we signed up. He was transferred to the Hospice Wing that very day.

Unfortunately, the two women who transferred him to his new bed were rough with him. They aggravated a chronic sciatic nerve/disc degeneration problem Larry has had for a few years now. Were they Hospice staff? I'm not sure. But they were banned from the room at our insistence.

The next day, Larry wanted to come home. He was totally out of his head, but he knew he wanted to be home. Me? I wasn't so sure. I have absolutely NO medical training. I'm not caretaker material. But Larry wanted to come home, so the arrangements were made, and VERY quickly at that. Larry wanted the catheter out. Me? I wasn't so sure. I have absolutely NO medical training. I'm not caretaker material. (See a pattern here?) So, doc talked to me about a "Texas Catheter". Perhaps I misunderstood, but I thought that the catheter he had was going to be removed. I promised him all morning that it was going to be removed as soon as we got home. While he was on the transport bed, I found out the catheter was not going to be removed for 3 days (his expected life expectancy at that time), so I spoke with doc again. She told me that she ordered the catheter left in because of my fears. I told her that I had promised Larry that the catheter would be removed. She told me, "You are an excellent advocate for your husband", and the catheter was removed right before he was transported home. So, we got home, and people starting arriving. Larry flourished. He held court from his hospital bed for about 100 admirers!

Later that evening, a hospice nurse came over and explained all the meds we were given and all the meds we were yet to receive and how and why to administer them. OK, Lynn, breathe. You can do this!

The next day, a CNA arrived to do a bath. We didn't like her straight off (she insulted Larry's beloved Packers!), but she taught us how to adjust him in the bed and other helpful hints. Turned out, she wasn't our regular CNA, who we came to love dearly.

The next day, our community nurse and our med package came. Unfortunately for our nurse, the one drug we desperately needed, Haldol, was missing from the package. My support system was ready to walk out on me, because Larry was having hallucinations and was being EXTREMELY difficult to deal with . They were at the end of their collective ropes, and I (repeat mantra) have absolutely NO medical training. I'm not caretaker material. "I DON'T CARE HOW MUCH IT COSTS AND HOW FAR I HAVE TO DRIVE TO GET IT, I NEED THAT HALDOL!!!!!!!!" Poor dear, she told me that there would be no cost to us. I reiterated: I DON'T CARE HOW MUCH IT COSTS AND HOW FAR I HAVE TO DRIVE TO GET IT, I NEED THAT HALDOL!!!!!!!! She called in a local prescription and we got our Haldol.

After that, we settled into our routine. Doctor comes once a month, nurse comes once a week, CNA comes up to 3 times a week. We love them all! And you can always call them (day or night) with a question. They are very responsive.

And maybe it is because Larry has insurance through his employer (Cigna), but we are on Hospice, chemotherapy and even CyberKnife simultaneously. Actually, we are all surprised that Cigna is covering everything simultaneously. They even pay for his periodic scans through the onc doc.

The way I understand it, Hospice is non-profit, so, of course, they cannot afford to pay for treatments and scans. But if your insurance is willing to pay for treatments and scans while on Hospice, you can continue with both simultaneously. And if your insurance company requires you to drop Hospice while you pursue other treatment options, Hospice will pick you back up immediately after treatment ends.

I guess my main purpose of posting all this nonsense is to say this:

If you are expecting 24-hour home care, Hospice will probably not satisty you. But if you are willling to learn how to take care of your loved one with support from professionals, you will probably appreciate and come to love your Hospice staff.

And don't just assume that your insurance company won't cover all your treatments and Hospice simultaneously. Pursue it with your insurance company if you have to. Even though the CyberKnife folks and Hospice doubted that our insurance company would come through for us, they did.

Oh, and it's probably pretty telling to add this: Both Larry and I were mortified to think that we would have to drop Hospice for even one single day to pursue CyberKnife. Thankfully, we didn't have to. Phew!

[CaroleHammett]

My insurance covers both Palliative Care (chronic, probably ultimately hospice) and Hospice Care; and I was placed on Palliative care the first time* in May 07 following a pulmonary embolism. Both are covered by my insurance and are also covered by Medicare (and so far as I know) all state Medicaid programs. The organization that provides my Palliative Care is Hospice Care of Boulder and Broomfield Counties [Colorado], which has both Palliative Care and Hospice Care teams and is non-proft (they also have a thrift shop and raise additional money regularly as they also accept indigents).

My palliative care team includes:

(a) a palliative care doctor who is not on Hospice but is on call all the time, who makes house calls and who liaises with my specialists (initially my pulmonologist and my medical oncologist--who refers to them as his "eyes and ears");"

( a palliative care registered nurse who visits at least once weekly to assess my condition and needs (she arranged for my walker, commode, electric scooter, hospital bed and tray table, etc.; also checks my meds and helps me get refills if I get low and forget) and comes more often when I am in need of additional nursing (changed picc line dressings, administered home IVs, ordered (via palliative care physician) prescriptions delivered to the house, etc.);

© a palliative care licensed social worker who comes at least once each two week and more often as needed. She both counsels me and helps me find additional resources (whether insurance, financial, meals on wheels, library home delivery, volunteer snow shovelers,l etc.) and also works with my oncology social worker;

(d) a palliative care spiritual counselor who comes once every two weeks (or more frequently as needed) who is prepared to discuss patient spiritual needs regard of religion (including agnosticism, atheism, etc.) as well as philosopical; and

(e) a palliative care CNA who comes for one hour twice weekly and helps by changing bedding, cleaning kitchen and bathroom, preparing simple, easy to eat meals from the dried goods to those in refrigerator (she's very efficient and effective in determining what my needs are before I even have them).

This team meets with my palliative care doctor and palliative care pharmacist every other week to discuss my case and during the week, they maintain highest possible communications with each other, including Blackberries for team text messages and voice mails.

Unless ASCO comes up with a miracle drug next week, I will probably be transferring to the Hospice Team soon (in which case I will be requesting that my palliative care team become my hospice team ).

I now also have a private part time CNA caregiver (12 hours weekly) who works closely with my palliative care team (I signed papers so that she can trade information with my palliative care team) and who also gives me regular massages and runs errands for me and drives me in my handicapped accessible minivan (with portable liquid O2 in case my pulse oxygen needs a refill while we're out) in between handling the same types of activities as my palliative care CNA. I also signed the same release for my acupuncturist who is not only licensed in oriental medicine, but is also an occupational therapist (I see him three times weekly in one hour sessions) and ditto for my mental health therapist (whom I see for one hourly session weekly).

All of these medical professionals other than my acupuncturist and private CNA are covered by my insurance; and I have nothing but the kindest words for all of them. They are brave, resourceful, caring and giving and have provided me with all possible tools both for (a) buying time and ( ensuring that my remaining time includes quality of life. Frankly, I doubt highly whether I would even be alive today if not for their presence, knowledge and activities.

What I do know is that frequently they are brought into the picture too late to provide any real, substantive help to the patient... that too often the patient and his family hear the word "hospice" and immediately decide it's a warning that the patient already has a leg out the door, instead of taking timely steps to help the patient with both counseling and comfort care so that during his/her last days, weeks, months, years on earth s/he has the highest possible quality of life.

Reminder: Some hospice organizations are NOT non-profit and from what I have been told locally by others (both patients and their family members) is that the level of care they receive is not nearly as high as that of the non-profits.

Carole

*The reason I write "the first time" is that the palliative care team took such good care of me that I was able to "resign" in July 07 and take my grandchildren on a "memory trip" to southern California, including to Disneyland; I became ill again upon my return, was signed up with them again and by Sep 07 was well enough to resign again and take a Mexican cruise with 12 female family members and friends. Again I came home ill and have been on Palliative care ever since.

[simplyklb]

My dad is on palliative care with Kansas City Hospice and Palliative Care. The oncologist office made the referral for us. The referral to KC Hospice and Palliative Care has been a Godsend! The nurse comes in twice a week to monitor dad. I will talk to her tomorrow to see if someone can check him over the weekend. My dad had an OT come in yesterday to assess his needs. We ordered a commode, walker, and transport wheelchair yesterday and it came this evening. The man who delivered it showed us how to adjust the equipment to meet Dad's needs. I plan on donating the equipment back to KC Hospice and Palliative Care after Dad is done using it. We meet with the social worker later this week. I utilize the volunteer service. It benefits my mom. My dad is not as receptive yet. I am hoping that he will warm up to the idea. It allows me to get out for an evening.

I was talking with a cousin this evening. My uncle has cancer and is not getting any treatments for it. He was given less than a year. They are meeting with hospice tomorrow night. I told her that is something that they need to utilize. I will call her later in the week to see how the meeting went.

Kristi

[CaroleHammett]

Hi, Kristi.

Your KC organization's set-up may be different from mine here in Boulder, but in the case of my palliative care RN, she doesn't normally come in on weekends just to check on a patient unless they've gotten a call from the patient or the patient's caregiver(s) regarding a specific problem.

For example, when I experienced a recurrence of my radiation pneumonitis last week, both my temperature and my supplemenmtal oxygen needs fever rose sharply. I called to advise them and they sent an RN out to do an assessment. She then liaised with my palliative care physcian to determine the appropriate actions to take next.

This is the third time this had happened to me in a month (two of which occasions had occurred on the weekend, of course ) and on both earlier occasions they had referred me to the local ER (where I was seen and treated and then sent home-thank heavens!).

On this last occasion, after an assessment, my palliative care physician conferred with my oncologist and they determined that my chemo (Alimta) was the culprit (toxic to my system) and upped my prednisone without my even having to go to ER. The increased dosage worked and I'm now on the mend again.

I give you these extra details just in case they are helpful in terms of the overall picture. I'm sure each organization is somewhat different in how they handle situations--the main being that they are such a great resource and that their main goal is always comfort care, which definitely works for me!

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

[simplyklb]

Hi Carole,

I am going to ask when the nurse comes out today. Dad has an assigned weekday nurse. We met her for the first time this past Friday. She likes my folks' oncologist (and we do too). We had our intake done on Father's Day I know organizations can really vary. We can call anytime day or night. If it is something that can't be handled over the phone, a nurse will come out.

Kristi

[simplyklb]

Dad's nurse will come out to check him on Friday afternoon. She wants to make sure he is OK for the weekend. I will find out on Friday when she comes out next week.

I had lots of questions for the nurse today. I am not afraid to ask.

Kristi