The Talk –  Multiple Sclerosis …. Speaking to Your Family About Your Disease

The Talk – Multiple Sclerosis …. Speaking to Your Family About Your Disease

 

                            

 

FOR A RECORDING OF THE WEBINAR, PLEASE CLICK ON THIS LINK: https://youtu.be/vMIGcVsMBEY

MORE INFORMATION ON OUR TWICE MONTHLY MS VIDEO CHAT VIRTUAL SUPPORT GROUP CAN BE FOUND AT: https://ancan.org/multiplesclerosis/

TO SIGN UP FOR A REMINDER BEFORE EACH SUPPORT GROUP, GO TO: https://ancan.org/contact-us/ 

FOR MORE BACKGROUND ON DR. BOSTER & THE PANELISTS, CLICK: https://bit.ly/2ElEXpW

 

The TALK – Mutliple Sclerosis looks at how families speak within themselves when a family member is living with MS.

We’ll be speaking with pairs of parents, kids, and siblings, one of whom and sometimes both, live with MS. Our Moderator for this session is popular and well know MS neurologist, Dr. Aaraon Boster.

Living with any disease is not easy, and living with multiple sclerosis can be a special challenge since it impacts so many aspects of your life. This can be difficult to explain to your family… especially to your children and your parents. Layered on top of all the other family dynamics, you have to communicate life with MS too. We’ll take a look at how different generations cope with this issue by talking to peers living with MS and their family members who are most affected. And you’ll enjoy hearing from nationally recognized MS neurologist Dr. Aaron Boster, who will offer his perspectives and expertise on MS and family communication. 

 

More Evidence to add Palliative Care Early!

More Evidence to add Palliative Care Early!

Here is more evidence to support AnCan’s position that it is benficial to add palliative care to your medical team early for those diagnosed with T3/T4/advanced cancer.

While we question the validity of the statistical results based on the large drop-out rate that likely selects for lower overall survival, there is no question in our minds that palliative care is very helpful in manging treatment symptoms and side effects.

Onward & upwards …. rd

 

Participants in Early-Phase Clinical Trials Need Better Palliative Care Integration

Patients participating in phase 1 clinical trials could benefit from the integration of palliative care, according to data presented at the 2020 ASCO Virtual Scientific Meeting.
BY BRIELLE BENYON
PUBLISHED JUNE 05, 2020

Palliative care is an integral part of a cancer treatment plan and should not be dismissed for patients who are participating in clinical trials. In fact, data presented at the 2020 ASCO Virtual Scientific Meeting showed that patients participating in phase 1 clinical trials tended to have improved quality of life (QOL) outcomes when they received palliative care.

“We all know that ASCO now recommends concurrent palliative care by a palliative care team within eight weeks of diagnosis based on multiple randomized trials showing improved symptoms, improved quality of life, less depression and anxiety, despite increased prognostic awareness,” Dr. Thomas J. Smith, professor of oncology at Johns Hopkins Medicine, said during a pre-recorded presentation of the research.

A total of 209 patients at Johns Hopkins Sidney Kimmel Cancer Center and City of Hope received a palliative care intervention, which included two nurse-led visits to discuss physical, psychological, social, and spiritual issues, as well as advance directives. There was then an interdisciplinary team meeting to discuss each patient and make recommendations. There was also a single goals of care (GOC) discussion.

These patients were then compared to the control arm, consisting of 218 patients. However, by the end of the study, there were 112 patients who completed the intervention arm and 113 patients in the control arm. Others either withdrew or refused, were too ill to complete the study, died, or were lost to follow-up.

“In fact, the mean overall survival was 8.1 months. So that fits appropriately with palliative care and advanced medical directives,” Smith said.

The initial distress thermometer score was 3.6, “where most authorities recommend that 3 is a cutoff for an intervention,” according to Smith.

Patients provided with palliative care showed less psychological distress (average score of 1.9 in the intervention arm, vs. 1.2 in control). Though not statistically significant, the palliative care group also had a trend toward improved QOL (3.7 vs. 1.6).

Participants had high rates of symptom-management admissions (41.3%) and low rates of advance directive completion (39%). A total of 30.7% of patients used supportive care services, including hospice. There was no clinically significant change in patient satisfaction with oncology care providers, which was already high at baseline.

Ultimately, the researchers concluded that there is a need for better integration of palliative care for patients participating in phase 1 clinical trials, especially as patients move from treatment to supportive care at the end of their lives.

“Remember to always ask about symptoms and advanced medical directives, even in phase I patients because they will have symptoms,” Smith said. “And most of them want to have a discussion with (oncologists) about advanced medical directives.”

CURE TALK – Redefining Cancer Palliative Care with Dr. Mike Rabow, UCSF

CURE TALK – Redefining Cancer Palliative Care with Dr. Mike Rabow, UCSF

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 ….

More Evidence to add Palliative Care Early!

Palliative Care Meets Telehealth!

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!

 

Palliative Care Takes to Telemedicine in COVID Crisis

— Specialty built on personal contact finds telemedicine a boon to their profession

A female healthcare worker helps a bed ridden elderly female patient use a tablet

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.”

More Evidence to add Palliative Care Early!

ASKING FOR HELP …… & that includes the male gender!!

Peter Kafka, our Board Chair, is currently in the midst of chemo. He relates first hand why men must to get off their high horse and ask for help – it can solve many medical problems simply!  (rd)
ASKING FOR HELP

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!