June 19th @ 10 am Eastern
Most who particpate in AnCan’s programs know we are massive proponents of involving palliative care, or as UCSF calls it ‘Symptom Management”, early in your treatment path – so we stronlgly recommend attending this CureTalk webinar.
Dr. Mike is a good friend of AnCan, as is CureTalk – so please don’t miss this presentation. You can register here.
Onward & upwards ….
Regulars to our Advanced Prostate Cancer Virtual Support Group know the value AnCan places on the importance of palliative care, and having a palliative doc on your treating team. And NO – paliiative care is NOT the same as hospice; it is not end of life, nor anywhere near it. What it is, is the best way to treat comorbiditiies or what commonfolk call side effects. And it can be a lot more than that – like help dealing with mental health and social challenges surrounbding serious and chronic disease.
Just last night, our Advanced Cancer Caregivers Virtual Support Group was faced with an overwhelming issue that our moderators felt could be cut down to size with the help of a paliiative care or symptom management service, perhaps with telehealth involved in this current environment. Then today as if on demand, Medpage Today published this article! Since readers are required to register for Medpage Today, albeit free, it is reprinted below.
AnCan is proud to have Dr. B.J. Miller on our Advisory Board. BJ is a colleague of Dr. Mike Rabow, a friend of ours too, who is named in the article. If you want to learn a little more about palliative medicine and enjoy a wonderful TED Talk viewed by more than 10 million, watch BJ here!
Before COVID-19, Mollie Biewald, MD, was skeptical about using telemedicine for palliative care visits. But now, she has found herself holding iPads or iPhones at the patient bedside, helping families make difficult decisions.
Over the past few weeks, some of her patients — whether hospitalized for COVID or another disease — have received daily family visits via Zoom or FaceTime. When a patient is actively dying, with the family present remotely, Biewald or another clinician will often stay at the bedside, holding the device.
“It is amazing,” said Biewald, a palliative care physician at Mount Sinai Hospital in New York City. “We mostly use it to bring the family to the bedsides of patients who are otherwise totally separated from everyone they know.”
While she initially thought it would be “nothing like the real thing,” she has changed her mind, as it has enabled family members to see their loved one and be present virtually while the patient is dying.
“It’s not ideal, but the best we can do, and much better than the alternative,” Biewald told MedPage Today.
Other palliative care teams across the country similarly have taken to telemedicine to conduct advance care planning and goals-of-care conversations with patients without having to enter their hospital room or increase the number of personal contacts by providers. Professional volunteers from around the country have also helped with palliative care consults and virtual office hours in support of providers in New York City.
More than other medical specialties, palliative care is built on personal contact, conversation, and relationship-building — supporting patients and families to clarify their values and define their treatment preferences in the face of serious illness, whether they are in the hospital or the community.
Michael Rabow, MD, of the University of California San Francisco, heads a busy outpatient palliative care clinic that was an early adopter of telemedicine, providing about half of its visits remotely.
“After this crisis ends, whatever new normal looks like, the numbers for tele-visits may go down, but not to where they were before,” Rabow said. “I think a lot of providers have recognized that telemedicine can work in palliative care, but the ideal balance between remote and in-person visits is not yet known.”
Palliative care professionals in some cases could be brought in virtually to assist other clinicians in discussions about whether a COVID patient with comorbidities whose condition is getting worse would want to go on a ventilator, given the poor outcomes. Might they consider the alternative of dying without the vent, perhaps in a private hospital room or at home, supported by hospice care?
“The biggest benefits of palliative care consultations are further upstream, when people can consider in advance what would be important to them in a situation like that,” Rabow said. If they understand the ramifications and don’t want to die of COVID in the hospital, alone and on a ventilator, then they may want to express other choices now, through an advance directive.
For Michael Fratkin, MD, founder and CEO of ResolutionCare Network, a community palliative care service headquartered in Eureka, California, telemedicine is not only essential to delivering palliative care services to seriously ill patients in the current crisis, he thinks it provides a better medium, in many cases, than in-person visits, given the nature of the conversations.
Prior to March 16, when California shut down in response to COVID-19, ResolutionCare Network was conducting 30% to 40% of its local patient encounters by video on a computer, iPad, or smart phone, and the rest in person. Since then, its team of four physicians, nurses, social workers, and a chaplain, mostly working from their own homes, has provided 100% of visits remotely to a caseload of 200 patients.
What happens in these virtual meetings with seriously ill patients and their caregivers? Trust building, goal setting, shared decision making, advance care planning, symptom management, and the identification of social determinants of health, caregiver adequacy, and available community resources, Fratkin said. What makes it better is the relational quality of the encounter.
“We haven’t had a single situation that required an exception to our no-home-visit policy,” he added. Some patients have been referred to their primary care physician, to urgent care, or to the hospital for more acute needs. Precautions are practiced even though Eureka to date has had few COVID-infected patients. “We are prepared to go to the home, dressed in personal protective equipment (PPE), but we just haven’t needed to.”
Satisfaction with this approach among staff, clients, and referral sources is almost universal, Fratkin said. “Even for the resisters. They got over it quickly.” Advantages include the pragmatic — such as reduced risk of exposure to the virus. People don’t have to get up, get dressed, drive to the doctor’s office, and sit in a crowded waiting room; staff don’t have to drive on back roads to the patient’s home, he said.
“And it prevents a feeling of ‘home invasion’ by our staff. Everything we wish to see in the home has to be shared by consent of the patient. It’s a more balanced power relationship, without giving up anything in terms of trust-building or the intimacy of the interaction.”
Most of the patients Fratkin’s company serves are Medicaid-covered, often buffeted by housing and food insecurities, substance abuse, mental health issues, and trauma-informed losses, he said. “Because of our experience in telemedicine, we are being asked to be part of conversations aimed at getting patients out of the hospital and keeping them out.”
“Telemedicine is providing insights into all the ways to improve healthcare,” Fratkin said. It took the virus to change the game. “This experience with COVID will take us past the tipping point, to where the public better understands what palliative care is all about.”
Why is it so difficult for men to ask for help? Perhaps many men view it as a sign of weakness if we can’t handle a challenge on our own. I have had plenty of occasions to ask myself this question over the past number of years. In terms of changes in my body and internal mechanisms I have noticed that I can “put up” with many things for long periods of time under the belief that whatever it is that is going on will go away or I will adapt to the changes. When I think about it now, I realize that this is a pretty stupid approach. An independent nature can get one in big and unnecessary trouble.
For many months before I was diagnosed with Prostate Cancer, I was symptomatic with urinary retention. In simple terms, I could not piss. This is not a normal condition which I knew, but somehow, I talked myself into believing that it was a sign of aging and probably nothing more than an enlarged prostate. It did not help that my urologist was not very attentive and did not give much more than a passing thought and a prescription for Flowmax for my condition.
After months of pushing on my gut in order to force out small amounts of urine to take the pressure off my bladder, it was a close friend who pushed me to seek medical help. I did, and as they say; “The rest is history”. But I went through many months of needless discomfort and agony before I humbled myself enough to seek help. Was it embarrassment? Arrogance? Independence? Perhaps a bit of all of these that kept me from asking for help.
I mention this because I am still learning thIS great lesson. In my current regimen of chemotherapy, I have noticed marked changes to my vision. My first thought (self-diagnosis again) was that it must be cataracts. Perhaps the chemo was accelerating this “natural” phenomenon that comes with aging for many of us in our 70’s. But the changes in my vision were substantial and rapid enough that I thought it would be worth mentioning to my medical oncologist during a recent telephone consult. I included this item in my list of “talking points” which I put together for each and every one of my medical appointments. It is too easy to forget stuff. I have learned this the hard way.
The answer came quick. It was not the chemo; it was the Prednisone. Sure enough, when I searched out the side effects of Prednisone, the blurry and cloudy vision I experienced was one of them and even at the low dose I was taking. I inquired about why I needed this steroid, I was told that for some it helped stimulate appetite and energy levels. With my doctor’s approval I weaned myself off the prednisone and decided that I would try and continue my chemo regimen with out it.
So, I guess I am still learning the great lesson: Be your own best advocate and ask for help!
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Editor’s Note: Some of our AnCan prostate cancer community have alrady seen this message, but we felt it was important enough to broad- rather than just narrowcast!
AnCan has recently noted a couple of examples where involving more rather than fewer doctors can be benifit the patient. However, doctors, advocates and others may disagree. Since AnCan believes that YOU, the patient, are your best advocate, we’ll leave it to you to decide.
The first example involves palliative care …. and NO, palliative care is NOT hospice. Listen to this 2′ video from Dr. Elizabeth Loggers at Seattle Cancer Care Alliance, one of the best cancer treatment facilities in the country …. she explains it much better than we ever could! Nonetheless, there is a reluctance by some medical oncologists to involve the palliative care service for their patients … even at a late stage. While some med oncs welcome the involvement of palliative care, others see them as meddling. We have seen examples to support this with different cancers and in different NCCN institutions, including those with the best palliative care services in the USA.
This concerns us greatly, because while the med oncs have expertise in addressing your cancer, they may not be experts in, and on top of, all the developments in pain and side effect management – like nausea, fatigue and more. And that’s why in some hospitals, Palliative Care is called ‘Symptom Management’ – for example Seattle Cancer Care and UCSF. It is not just a euphemism to dispel the association with hospice; it truly describes what the palliative specialty does. Some palliative websites boldy invite all cancer patients, no matter the stage, to consult with them! A further benefit to adding a palliative care doc to your team is the value of having a readily available quick and dirty second opinion on treatments your med onc prescribes. Perhaps this is the source of concern for your medical oncologist, but frankly they need to get over it and work collaboratively with your paliiative care doctor.
Those who follow AnCan well know AnCan pushes involving a palliative physician early in the treatment path for a multiple of reasons. And we proudly boast having one of the best palliative care doctors in America on our Advisory Board, Dr. B.J. Miller. For most NCCN/NCI institutions you do not need a referral – just make your own appointment. First try your quarterback doctor, but if they seem reluctant then advocate for yourself, force the issue and go direct.
The second example this week may apply more to prostate cancer than other oncological disorders, although maybe not! In most cases the diagnosis of cancer immediately involves a medical oncologist. For a few cancers, like prostate, a GU med onc (genitourinary medical oncologist for those unfamiliar with the vernacular!) may not get involved until the disease has clearly metastasized; we see that as a mistake that does not serve the patient’s best interest. AnCan believes a GU med onc, and in fact any specialty med onc, should be included as soon as the treatment plan includes a systemic protocol. And why – because surgeons and radiation oncologistst are not trained in internal medicine and systemic treatment – that is to say any treatment that impacts the whole body like chemo- or hormone therapy. That requires expert knowledge of internal medicine. Whle some may argue that med oncs only muddy the waters early in treatment, we disagree.