Reading the posts in the prostate cancer survivor group to which I belong is sometimes enough to get you depressed for days. And that's why I only read them now occasionally, especially as the cryotherapy results are still ambiguous in terms of getting rid of my cancer. Some of the more depressing posts are made by those who've already gone through three or even four treatments only to have the cancer return. By that point many are exhausted and this is downright understandable. Why keep going on if it looks like I'm going to lose the battle anyway?
The medical complex, of course, wants (and often demands) we go on until there is essentially zero chance of changing the game. Hence, they regard the palliative option as failure, even though added treatments may only marginally increase life - but usually at the expense of life quality. (E.g. hormone treatments for advanced prostate cancer can increase life by 1-3 years but usually with side effects including: memory loss, depression, diabetes, cardiovascular problems, enlarged and tender breasts, shrunken testicles, zero libido and hot flashes such as suffered by menopausal females.). Most do agree that if a guy has recurrent disease and a biopsy - PET scan shows it has spread to the bones ("bone mets"), his days are basically numbered - though certain treatments (e.g. Radium 223 or "Xoftigo") will allow some limited life extension.
The PET scan image above shows bone mets even in the spine. Each met is in reality a locus of prostate cancer. Most oncologists examining this image would say the guy's days are numbered and the best option is just to make his final months- days comfortable, say with hospice care.
When, in June 2016, I confronted my primary care physician and told her - after the latest PSA test came back at 6.0 - that I planned to do nothing more, she asked what options I had. The first thing that came to mind was hospice care. She wouldn't hear of it. Short of strapping me down to the exam table and coercing me, she said I HAD to see the urologist and listen to what he said concerning the latest fusion biopsy-MRI results . "What's wrong with hospices?" I asked, incredulous. She replied, "Nothing, IF you manage to get one that tends to your needs and has the staff to meet them".
At the time, though I believed this was balmy, I did comply with her urging and went on to get a 3D staging biopsy at UCHealth in January of 2017, then focal cryotherapy in June of this year.
It wasn't until yesterday, in the latest TIME magazine (Nov.27-Dec. 4, p. 50) I came across the hair raising accounts of what can go awry under hospice care in the article 'Hospices Promise Peace At The End But Many Don't Deliver'. It started with the horrific story of a 66-year old physician who chose hospice care at Mat-Su Regional Home Health and Hospice Care in Alaska, and when he needed it most, couldn't even get pain meds or a catheter. According to the piece:
"Patricia had enrolled her husband in hospice when the metastatic prostate cancer reached his brain."
(If you check the PET scan image above you will see the black mets in one patient's brain, taken from a UCSF study)
"She expected him to receive the same kind of compassionate, timely attention that he had given his own patients. But Bob had the misfortune to require care during a long holiday weekend when hospices are too often short-staffed to fulfill written commitments to families. The consequences, as documented through a review of written documents and interviews are dire."
In the case of Dr. Robert E. Martin "it took six days and many calls before he received the liquid methadone he needed"
To add insult to injury:
"The Hospice denied Patricia's request for a catheter and she and her son had to cut away Bob's urine-soaked clothing and bedding, trying not to cause him additional pain. A nurse who was supposed to visit never showed up, saying she was called for jury duty. The supervising hospice doctor never responded. Bob died just after midnight on Jan. 4, 2014."
So in effect, this is what my PCP was trying to spare me, or at least the chance of ending up in such a place by having to play "Hospice roulette". This, despite the fact - as the article points out - the Martins had entrusted Bob's care "to one of the nation's 4,000 -plus hospice agencies which pledge to tend to a dying person's physical, emotional and spiritual needs."
Can you say travesty? I can! Some facts pertaining to hospices in the US of A extracted from the article:
- Hospice is currently a nearly $20 billion a year business which serves 1.4 million Medicare patients (including over a third of Americans who died the same year as Bob)
- The mission of hospice is to leave patients and their loved ones in control at the end of life.
- Hospice care is available through Medicare to critically ill patients expected to die within 6 months who agree to forgo curative treatment.
- To get paid by Medicare hospice agencies must lay out a plan of care for each patient, snsuring they'll treat all symptoms of the patient's illness and be on call 24/7.
- Hospices must stipulate in each patient's care plan what services will be provided, when and by whom and update the plan every 15 days.
- Hospices are licensed by state health agencies and subject to oversight by federal Medicare officials and private accreditation groups.
- Though many people think of hospice as a site where people go to die, nearly half of hospice patients receive care at home. (This was the case for my mother who died of Alzheimer's in November of 2014.)
The above basically outlines the game plan of how the hospice system is supposed to work and what underpins it in terms of the regulations. (Which you can be sure will be upended if the GOOPs tax plan goes through and Medicare is cut to the tune of $25b a year).
For example, an investigation by Kaiser Health News in collaboration with TIME "analyzed 20,000 government inspection records, revealing that missed visits and neglect were common."
In fact, "families or caregivers filed over 3,200 complaints with state officials in the past five years. These led government inspectors to find problems in 759 hospices - with more than half cited for missed visits or other services they had promised to provide."
Though CMS tightened the rules in 2014 - requiring states to increase their oversight and records reporting by 2018 - the hospices don't face inspection each year to retain certification. Indeed, the only sanction now is termination and "CMS records show that the termination is rare". SO basically there is little or no accountability and hospice staff will figure they can still get paid by Medicare (which they do) even if the cut corners, fail to provide needed services - or even alter records (as one hospice nurse reportedly did - p. 53 - altering the time she had reported being at a home).
Without stricter regs, and enforcement, we are thus facing a hospice care environment run by too many renegades.
Why should you care? Well, if you give one damn about how much money is now being spent on elder care in the last years, this is a no brainer. As one salon.com writer (Josh Zepps) wrote in a 2016 'We The People Live' podcast:
Medicare costs more than $500 billion per annum, 30 percent of which is spent on the five percent of beneficiaries who die each year. One third of that is spent on the final month of life. The final month. I mean, you want to talk about priorities, let’s just take that one datum. More than $50 billion each year spent on the final month of life.
But - can he or anyone else blame seniors for grasping on to the "curative" (treatment) straw at the end of their days, if the hospice situation means playing roulette with your care? (As the TIME article notes, p. 52: "1 in 5 respondents said their hospice agency did not always show up when help was needed according to the Consumer Assessment of Health Providers and Systems'")
So - though I am leery of spending any more money on prostate cancer treatments - especially if the latest treatment result goes south I am not about to risk going the way of "Dr. Bob" in Alaska playing hospice roulette - and not even being able to get a Foley catheter when needed. No, I will stick on the curative - treatment path so long as warranted (by my PCP, urologist and others).
A waste of money? Maybe. But if that's the case - and it likely is for many hundreds of thousands - then we need to fix the damned hospice system so severely ill patients (and their families) can feel confident going that palliative route!