End Stage Myeloma- Hospice or Home?

“In addition to quality-of-life improvements, enrolling appropriate patients with multiple myeloma into hospice may also have cost implications, a new study found.”

No multiple myeloma (MM) patient, survivor or caregiver wants to think about end stage multiple myeloma much less the cost implications of our end-of-life. I think we all understand the concept, intellectually at least, but we don’t want to think about dying. In all fairness, PeopleBeatingCancer.org is about managing MM, not about dying from MM.

Once a survivor’s MM stops responding to chemotherapy (MDR or multi-drug resistence), the MM takes over causing side effects such as anemia (bleeding), infection (pneumonia), kidney failure and bone damage to name the most common MM side effects.

My point in listing these end stage problems is that they are difficult to manage at home. While I am the first MM survivor to go on record as saying that I would prefer to die at home, after reading the article linked below, I would rather die in hospice knowing that my end-stage problems would be managed properly.

The other important aspect of the study below was the phrase “cost savings” followed by “myeloma.” As much as I don’t like to think about my end-of-life, I do like to think about cost savings…

Or to put this idea another way, I don’t want my end-of-life care to amount to a larger than necessary bill for my family. And MM is an expensive cancer.

If you or a loved one has been living with MM for one or more years there is a good chance that you all have incurred serious expenses mananging this incurable blood cancer. After all, not only are medical expenses crushing in general, but the cost of managing MM is ridiculous.

I understand that having MM and thinking about, much less planning your life for end stage myeloma may feel like you’re giving up. But as a long-term MM myself, I assure you that thinking about hospice is like writing your will. It is more about planning and how your MM and death may affect your family.

Please scroll down the page and tell me if you think I am right or full of _____. I am curious to read what you think about this sensative topic.

Thank you,

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Hospice Associated With Cost Savings at End of Life for Myeloma Patients

“In addition to quality-of-life improvements, enrolling appropriate patients with multiple myeloma into hospice may also have cost implications, a new study found.

“We found that hospice enrollment among patients with myeloma is associated with decreased healthcare expenditure at end of life…”

Fiala and colleagues conducted a retrospective study of 2,075 patients with multiple myeloma diagnosed from 2007 to 2013 in the SEER-Medicare linked dataset. All included patients were 65 years old or older, received therapy for myeloma, and had an overall survival of 3 or more months. The median age of patients was 76 years.

Just over half of patients (56%) enrolled in hospice at the end of life. Among these patients, 18% enrolled within 3 days of death, which is considered to be “late enrollment,” according to the researchers.

Female gender and increasing age were associated with increased odds of hospice enrollment. In contrast, non-white race, Medicaid enrollment, and increasing comorbidities were associated with worse odds.

The study also found that the median overall survival was longer among patients who enrolled in hospice compared with those who did not (19.6 vs 16.6 months; P = .0045)…

The median cost of end-of-life care was $15,870. The median cost among patients enrolled in hospice was $9,175 compared with $22,921 for those not enrolled (P < .0001). Controlling for covariates, the researchers estimated that enrollment in hospice was associated with more than $13,000 in decreased costs.

The time of hospice enrollment also affected end-of-life costs. The median cost of care for patients who enrolled within 3 days of death was $19,582 compared with $15,914 for those who enrolled within 3 to 14 days of end of life, and $4,508 for those who enrolled with more than 14 days to end of life (P < .0001).

The researchers noted several limitations to the study, including that data did not reflect “information regarding patient preferences, physician recommendations, or appropriateness of care…”

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6 comments

Kip Praissman says 4 years ago

Hi David,

Thanks for the wonderful resource. My mother has had MM for 10 years now and has seemingly run out of treatment options. Daratumumab had been keeping the disease at bay for the the last couple of years but no longer seems effective. She had a terrible reaction to Velcade and has tried pretty much every other available option. The MM is really starting to destroy her bones and she just broke her right arm, this only months after breaking her femur which did manage to heal though. I was hoping she could get in a CAR T-cell trial but she know longer is mobile enough to care for herself which seems to be a requirement of clinical trials. Any suggestions on where we go from here? Her diet/supplementation/holistic therapies are pretty much non-existent. I did try and get her to take curcumin but she had a bad reaction to it. I have her taking some liquid THC oil, which does seem to help with her nausea. Any advice is greatly appreciated.

Kip

David Emerson says 4 years ago

Hi Kip-

I am sorry to read of your mom’s MM situation. The therapy options I can suggest are:

1) evidence-based integrative therapies- (therapies shown to enhance conventional therapies)
2) alternative therapies- the challenge with alternative therapies such as antineoplaston therapy (ANP) and poly MVA, for example, is that there is little if any evidence of efficacy. There may be individual testimonials but no large studies.

Hang in there,

David Emerson

Kip Praissman says 4 years ago

Thanks for the prompt reply David. Are there any particular therapies you know of that work well to combat extremedullary plasmacytomas?

David Emerson says 4 years ago

Hi Kip- Two things. First, systemic chemotherapy is designed to eliminate all lesions, in bone and out. However, if systemic chemo is no longer an option, consider local radiation. This would be “palliative” meaning it is not curative therapy but my sense is that you are working at individual problems right now. Talk to your oncologist and or a radiologist.

Thomas P Moran says 4 years ago

David how were you able to survive this long with MM?. I have had the disease for about 2.5 years and it has been a tough time to just survive this long. I am only 58 years old and in good health before my diagnosis in 2017.

David Emerson says 4 years ago

Hi Tom,

I am sorry to read of your MM diagnosis. A proper reply to your question about how have I managed to live with MM since 2/94 is too long for this reply. However I will say that, in a nutshell, I think and act as though conventional MM oncology has it wrong.

By wrong, I mean that standard-of-care therapies try to cure the patient of his MM. Therapies like induction, ASCT and maintenance are toxic and cause a great deal of damage to the MMer. I think that MMers should eat, supplement, exercise, live, etc. evidence-based, non-toxic MM therapies.

Which is what I do.

Hang in there,

David Emerson

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End Stage Myeloma- Hospice or Home?

“In addition to quality-of-life improvements, enrolling appropriate patients with multiple myeloma into hospice may also have cost implications, a new study found.”

Recommended Reading:

Hospice Associated With Cost Savings at End of Life for Myeloma Patients

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6 comments

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