Dr. B.J. Miller’s Prognosis Declaration Can Revolutionize the Quality of Your Treatment Path
One of the most compassionate, influential and remarkable docs I have had the great fortune to encounter since I got into this biz, is Dr. BJ Miller. We are honored to have BJ on our Advisory Board, and while we rarely speak live, I consider him a friend.
More significantly, a couple of men lost to this disease who I have known well, welcomed BJ to their medical teams …. and he made a huge difference to them. In a recent webiinar “Making Medical Decisions”, BJ shared a revolutionary document with us ….BJ’s Prognosis+Declaration
All too often medical teams put their foot in their mouth …. and sometimes unwittingly yours, when they provide an unrequested prognosis for your situation. Some may want to know how serious their disease is .. or how long they have to live; others frequenbtly do not. The Prognosis Declaration offers four (4) options from knowing everything to knowing nothing, or maybe having your caregiver know but not you. You determine what you want to hear, and you give the Prognosis Declaration to your medical team upfront ….. brilliant! The form was developed by one of BJ’s patients who lost his wife to cancer.
The whole webinar, Managing Your Medical Decisons, can be heard here – it’s truly worth a listen.
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
Recently AnCan in partnership with UsToo initiated a webinar series titled; The Talk. The series focused upon the significance of conversations with family, particularly our children regarding the implications of a diagnosis and treatment for cancer. My younger son Jeffrey and I participated in the panel of the first webinar speaking about the reality of genetic driven prostate cancer and the possibility of passing it on to my children.
Last night I was thinking about another “TALK” which was a big part of my experience this year and one which is often difficult to have. In early May of this year my one sibling, my sister passed away at the age of 78-1/2 years. She was kind of a renegade and a rather unique woman. Her first love and passion was riding motorcycles. When she died, she left 3 bikes in her garage including her 1981 RS -1100 BMW. She began her motorcycle experience way back in the 1950’s as a beatnik in Greenwich Village. Later she made numerous trips to ride in Asia, Europe and all over N. America attending many BMW rallies.
I mention this because as her health declined in her later years, she was quite clear with me about not wanting to prolong her life when she could no longer ride her bikes. She and I had numerous “talks” about end of life issues. She always thought she would “go out” in a fiery crash, but alas it was not to be. She broke her hip and because of many other leg problems it was doubtful that she would be able to walk again. After hip surgery she was moved into a nursing home where she lasted about one week.
Her last couple of weeks she was pretty foggy and incoherent but she and I were able to connect via Face Time a day or two before the end. She knew me, and expressed her wish to get out of the facility and go home. I told her that until she could master a walker she could not do so. She knew that was not to be and I asked her if she was going to go to “Plan B”? She said; “Yes, it would be Plan B”. A day or two later she refused her food and meds and removed her oxygen and facilitated the end of her journey. She knew she lived a remarkable life and lasted beyond her expectations and was ready to depart.
I am very thankful that we made the space to have, The Talk so that we both were prepared for the unexpected. It made the transition so much easier. I guess I bring this up because it is kind of the elephant in the room for all of us and so many ignore this reality and put off The Talk. Most likely very few if any of you who participate in our Low and Intermediate Prostate Cancer Virtual meetings will pass on as a result of this disease, but still the fear tends to lurk in the mind.
If you have attended our Advanced Prostate Cancer Group, or our Speaking Freely Group or even our U60 Advanced PCa group, you may have been fortunate enough to hear Joe Boardman particpate from his erie in Colorado.
One of our earliest, and certainly most enduring, non-prostate cancer moderators has been nationally recognized caregiver advocate, Renata Louwers. In barely 12 months, if that, Renata lost her first husband, Ahmad, to bladder cancer back in 2014. Since that time she has tirelessly campaigned to establish the Caregiver perspective on the medical radar; not to mention all the fundraising she has done for BCAN and bladder cancer …. G-d Bless Her!
This past week Health Union published the second part of an article Renata wrote for their Bladder Cancer Page – both parts are linked below. And no, they are not specifically about bladder cancer but more about her experience of being a peer moderator for a videochat virtual group that AnCan runs for Advanced Cancer Caregivers.
The easiest way to find more of Renata’s articles …. and there are so many excellent ones, especially for The Philadelphia Inquirer, is to google ‘Renata Louwers, medical journalist‘; do it and you’ll have no regrets!
AnCan’s heartbeat thrives on helping peers; it races when our Volunteers, our lifeblood, find satisfaction in the work they perform for us at AnCan. We love our volunteers; we especially love you, Renata xox
To receive reminders for our Advanced Cancer Caregivers Group, or any others that are all free & drop-in, click here.
AnCan is a huge proponent of inclkuding palliative care in your treatment plan and medical team!!
Palliative care is NOT about hospice or end-of-life ….. that is just a sub-set of palliative medicine. At AnCan we prefer to call it Symptom Management, the lingo used by UCSF. That is no coincidence as AnCan has an excellent longstanding relationship with the UCSF service. Dr. B.J. Miller is on our Advisory Board, and Dr.Mike Rabow, the Director of Symptom Management Service at UCSF, is a friend of the family too.
Last Friday, Dr. Rabow gave an excellent webinar on CureTalks titled Redefining Palliative Care – you can listen here. For those living with advanced cancer, auditing this webinar is a MUST in our view!
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.”
Our Board President, he prefers this to Chair(!), reflects this week on a conversation many must face!
