Hospice / Pallative Care / Supportive Care for Blood Cancer patients is not suggested soon enough

[lankisterguy]

Hematologists are outliers in care at the end of life

EXPERT ANALYSIS FROM ASH 2018

Publish date: December 20, 2018

By Randy Dotinga Hematology News

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SAN DIEGO – When it comes to aggressive care at the end of life, hematologists stand alone.

ASH paper by Dr. David Hui of MD Anderson Cancer Center, Houston

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Hematology patients are more likely than are other patients to undergo chemotherapy and visit emergency departments and intensive care units when they’re near death, and they’re less likely to be referred for palliative care, according to David Hui, MD, an oncologist and palliative care specialist at the MD Anderson Cancer Center in Houston.

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An analysis at the center, for example, found that 43% of hematology cancer patients received chemotherapy within the last 30 days of life, compared with 14% of patients with solid tumors.

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“That’s not a number we’re proud of,” Dr. Hui said at the annual meeting of the American Society of Hematology. “Ultimately, at the end of life, do we want our patients to be in this setting? There is room for improvement.”

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The cancer center isn’t an outlier on this front, Dr. Hui said. Data from other institutions in the United States and internationally confirm that hematologic oncologists tend to provide more aggressive care at the end of a patient’s life, compared with other cancer specialists.

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“If you’re one of those patients, this is a very big deal,” said Dr. Hui, especially in light of data that suggest hematology patients get fewer referrals to palliative care than do other cancer patients. “Oncologists are optimistic, and hematologic oncologists especially,” he said.

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Dr. Hui led a 2014 study of 816 adult cancer patients who died while under care at MD Anderson Cancer Center during 6 months in 2009 and 2010 (Cancer. 2014 May 15; 120[10]:1572-8).

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“We found that patients with hematological malignancies were more likely to have multiple emergency room visits, intensive care unit admissions and death, and cancer treatments in the last weeks of life compared to patients with solid tumors,” the study authors wrote. “We also identified a relative lack of palliative care involvement in hematologic patients.”

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Specifically, hematology cancer patients were much more likely to get aggressive end-of-life care than were the other cancer patients (odds ratio, 6.63, P less than .001).

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Dr. Hui had led an earlier study that looked at the same 816 cancer patients and found that 45% had received palliative care consultations. But the researchers also found that patients with hematologic malignancies had significantly fewer palliative care referrals, the longest time between an advanced cancer diagnosis and a palliative care consultation, and one of the largest numbers of medical team encounters – a median of 38 – before palliative care (Oncologist. 2012;17[12]:1574-80).

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In light of these numbers, policies at MD Anderson Cancer Center “are evolving rapidly,” Dr. Hui said.

He urged colleagues to think about the wishes of their patients. “What do patients really want? Good symptom control, time with family, not being a burden, not a prolonging dying process, having a sense of control during the middle of the turmoil.”

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Dr. Hui added that the attitudes of oncologists regarding palliative care can affect whether patients get timely referrals to consultations. He led a 2016 study that surveyed 182 oncologists about end-of-life care and found that “many oncologists have a favorable attitude toward EOL care; this, in turn, was associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care.”

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However, “we found that hematologic oncology specialists expressed lower comfort levels compared with their solid tumor counterparts,” a finding that reflects the results of other studies, the study authors wrote (Oncologist. 2016 Sep;21[9]:1149-55).

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The stigma surrounding palliative care is a sticking point, Dr. Hui said, and has sparked a “rebranding” effort. Negative feelings about palliative decrease when it’s called “supportive care,” he said, and the new term is being adopted worldwide.

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Len

[cllady01 Former Volunteer]

So true. I wrote the registration form before my first appt. with Dr. Flinn, "I am interested in talking about palliative care when that is appropriate."

If it needs to be called supportive care, so be it. I do hope it is helpful for the Drs. and nurses (who are better at expressing the need) to be able to deal with the situations.

[Buckeye64 in reply to cllady01]

I requested palliative care when I started a drug trial. The onc did not want to do it so I asked the pcp. He said it was a reasonable request based on the diagnosis and that he would authorize it himself.

[canadagoose]

After 14 years and 7 treatments I asked my doc for a referral to palliative care. He said it was too soon. I insisted. It seems that palliative care has more to do with quality of life and people should be referred sooner than later. Seems folks confuse palliative and hospice. We could all use with a little help living with CLL before we die from it.

[scarletnoir]

Interesting points.

Whereas I'm all in favour of optimism, being that way inclined, it doesn't seem sensible to inflict aggressive treatments on patients who are likely in the last weeks of life... This seems to be an area where more balance is needed.

[Cllcanada Top Poster CURE Hero]

All CLL treatment is palliative...

About a year ago, circumstances of secondary cancer and fungal pneumonia, placed me into the position of not being treatable..every again, so the decision of 'to treat or not to treat' ....that is the question..., was pretty much decided for me...

However in my end-of-life situation, I found I needed to flip a switch intellectually from quantity of life to quality of life, and this I did with the full support of my extensive medical team...

While I'm followed by my doctors at regular intervals, and weekly by a community health nurse, I'm enjoying my end days...

I no longer rages rage against the dying of the light, but rather enjoy the sunrises and sunsets...

Everyday is a gift... as I go gentle into that good night...

~chris 🇨🇦

[PaulaS Volunteer in reply to Cllcanada]

Chris, I’m sure it wasn’t easy to flip a mental switch from quantity of life to quality of life. It’s great that that has been helpful for you though, and you are enjoying this end stage of your life.

I’m so glad you "no longer rage against the dying of the light", but see every day as a gift – enjoying the sunrises and sunsets…

Thank you for sharing your situation. I hope and pray that your end days will last a very long time, and be full of things that bring you joy,

As you say, all CLL treatment is palliative to some extent, and there are (or will be) times when we all need to re-tune our balance between quantity of life and quality of life.

Thanks lankisterguy Len for this very relevant post.

Paula

[Justasheet1 in reply to Cllcanada]

☹️🍻

[BellaBee10 in reply to Cllcanada]

Took my breath away reading that Chris. As always, thank you.

[flutterbye]

☹️🥂

[Newdawn Administrator]

I sense some confusion here about the definitions. Palliative care actually means the relief of pain and doesn’t have to be for people with life threatening/limiting conditions but usually is. It’s different to end of life care but can form part of it.

I can’t even address your post Chris because it upsets me too much but I’m fully supportive of your decisions and your choices.

I wouldnt want to say more on an unlocked post.

Newdawn

[Cllcanada Top Poster CURE Hero in reply to Newdawn]

Sorry, I didn't mean to upset you Newdawn...

All these definitions are overlapping and they vary tremendously from country to country as well...

Here is a definition of palliative care from the UK, there are probably others quite different. I recently ran into ' Comfort care and supportive care' recently... Wha!!

cancerresearchuk.org/about-...

Comfort care or supportive care

cancer.gov/publications/dic...

Hospice Care

cancer.gov/publications/dic...

~chris 🇨🇦

[Newdawn Administrator in reply to Cllcanada]

Oh you didn’t upset me Chris...the rotten situation did! I’m so glad you’re not raging against it but I still want to rage against it for you!

I only clarified that because a poster questioned the use of the term ‘aggressive care’. It sounds incompatible with the notion of tender end of life care but of course palliative care can be about a more aggressive, robust approach to pain management across a whole range of severe health conditions which may or may not be malignancies.

Palliative is usually associated with end of life care but I’ve seen it given for very long periods of time to people with long term, devastating but not necessarily life threatening conditions.

You keep on keeping on....

Newdawn

[Peggy4]

Unfortunately ‘palliative’ will always be associated with last days of life.

I applaud your feelings Cllcanada and would hope that I could have such gracious acceptance when that time comes.

Peggy