Want to make 2022 the best year of your sex life? We’ve got the webinar for you in “Cancer, Chronic Illness, and Intimacy”.
From pleasure with a partner, or just riding solo, nothing is off limits in this webinar featuring sexual medicine rockstar , Dr. Rachel Rubin.
Featuring a panel of patients Dion (lupus), Jimmy (prostate cancer), Kim (multiple sclerosis), and Michael (testicular cancer), and questions from the audience, you’re sure to find answers to your own questions.
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
From surviving to thriving to grieving… Award-winning artist and playwright Aoede shared stories, music and films illustrated how creating music and art has been her lifeline during her 14-year journey battling a rare chronic illness.
Watch here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
What do oncologists have against palliative care ….?
If you regularly attend AnCan’s virtual chat support groups, you are sure to know that whatever the condition, we frequently recommend palliative care … almost anytime and place we can.
And NO – palliative care is not about dying – it’s about preserving Quality of Life. Some of the smarter institutions have figured that changing the name to an acronym like Symptom Management Service at UCSF or Supportive Care at Memorial Sloan Kettering may account for greater acceptance and higher quality. It may also explain why these two institutions are among the best in the biz. Others like City of Hope, that still keep Palliative in their name, struggle to make palliative care easily available to their patients.
A recent article in Hospice News reports that “Cancer Patients Often Not Referred to Palliative, Mental Health Care”. Amongst 240 surveyed oncologists, only 17% referred their patients to palliative care early in the disease process. Yet many studies show that the earlier a patient is referred to palliative care, the better the outcome – especially for cancer. On more than one occasion at the same NCCN hospital, AnCan has had to navigate a participant to self refer to palliative care in order to receive treatment. In one instance, this even involved the Chief Medical Oncologist.
Given the underpinning principle in medical ethics of ‘Do No Harm’, essentially embodied in the Hippocratic Oath, how can this be?
At AnCan, we have a theory, we see this as a control issue. For some oncologists, and maybe other specialties who might collaborate with palliative care too, they are uncomfortable sharing patient management with other docs in essential areas like palliating comorbidities. While palliative care physicians are required to stay up on developments in pain treatment, antiemetic (nausea) drugs, and other forms of supportive care, oncologists have their heads buried in cancer care.
AnCan is very fortunate to have Dr. BJ Miller, one of the foremost palliative care gurus in the US, on our Advisory Board. If you doubt that, BJ’s TED Talk is now up to 14.6 million views! Dr.Miller now practices his profession from his own organization, Mettle Health; his services have comforted several AnCan participants. So we thought we would ask Dr. BJ Miller for his view on an issue he has lived with for many years …..
” I think medical training is part of the problem, as is confusing messaging around what is palliative care. and i agree that a piece of the problem is related to control, and, related, misunderstandings about how palliative care works (ie, as an additional layer of support that makes the treating physician’s life easier as well as his patients’; not a service that will steal your patient away or somehow undermine your authority).
and then there’s the culture of medicine, where death is the enemy and suffering is just part of the cost of doing business; and where medical issues are taught as separate from the psychosocial and spiritual issues a patient faces.
lastly, medicine generally does not include the caregiver/family in the equation, where much of the suffering happens.” …….. Tx BJ!
Sharing patient management may not come naturally to many physicians, especially if not part of their institutional culture. At AnCan we say, let the doctor most specialized in each aspect of care take responsibility for it on behalf of the patient. When inappropriate doctors stand in the way, the patient suffers.
Of course, AnCan is a patient driven organization ….. we welcome a response from other docs to explain what we are missing!
AnCan and The Marsh (well renown, long-established theater company with a large following in the Bay Area and venues in San Francisco and Oakland) collaborateevery 4th Wednesday of the month for Solo Arts Heal!
On December 22nd, we closed out our 2021 season of Solo Arts Heal with Alex Kaplan! (and on that note, we have even more fun to come in 2022!)
Alex, a Philadelphia native and LA transplant, was trained as an actor in the University of Miami’s conservatory and transitioned to a career behind the camera as a producer and director for the past decade.
Today, Alex is the Co-founding Executive Director & Chief Vision Officer at Of Substance (OfSubstance.org), an innovative non-profit revolutionizing addiction and mental health treatment, education, and support, using premium entertaining short films as a tool for deeper healing, growth, and transformation.
After surviving his own battles with addiction, Alex recognized the power of story as a tool in his recovery and found an exciting way to use his filmmaking experience to help others on their paths of overcoming struggles of shame & isolation. The biggest thing he learned on his journey is that his issue was far less about using substances than it was about WHY he used substances; It was about shame, isolation, a fear of not belonging, and a fear of not being good enough.
Alex and his co-founder Brian Gallagher built Of Substance to help us all recognize that we’re not alone in these feelings and to positively transform people’s relationships with themselves, others, and their beliefs in what’s possible.
“Our film “Trapped” is not simply for those of us who struggle with substance use, it’s for all of us who feel trapped sometimes. Hopefully Trapped will help us all better empathize with one another, recognizing and relating to the feeling and experience. This film helped my mother stop asking me “Why can’t you stop drinking?” and finally move our conversation forward to “I see you, I love you, I’m with you.” Our hopes are that this film can do that for you and your loved ones as well.” – Alex
Watch the performance here:
To SIGN UP for any of our AnCan Virtual Support group reminders, visit our Contact Us page.
