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.
The example used is an elderly man with prostate cancer, but frankly this approach is applicable to any type of cancer. And this approach makes a mockery of one of my favorite straw men, the USPSTF, who does not recommend PSA testing for men over 70. HELLO USPSTF ….. 70 is the new 50!
If you are over 65, consider raising geriatric assessments with your medical oncologist.
Reports on Bill Burhans and Richard Foody; moving from enzalutamide to abiraterone; choice of steroid with abi; ADT induced depression; spot radiation for mets; how come your penis woke up?; bone biopsy experience; find the right QB for your medical team; has ADT nailed your balance?
Ken Anderson is 58 …. he was diagnosed with de novo metastatic prostate cancer two years ago and has endured chemotherapy, radiation and been on androgen deprivation therapy since February of 2017. One of Ken’s goals has been to maintain as close to a normal life as possible .. and that includes lots of regular hiking and biking in his home city of Phoenix. A native of the Northwest, Ken had long wanted to complete this 15-day Washington State hike and was NOT going to let an absence of testosterone stop him …….
Ken has participated in AnCan’s weekly Advanced Prostate Cancer group since diagnosis. He has also mentored several other younger men initially diagnosed with metastatic prostate cancer; we are very proud of him ….. !! If you would like to follow up with Ken on his experience, please reach out to us at info@ancan.org and we will make the connection.
Ken & Sister at Hearts Lake above tree line (day 9) –
Living the best possible life while dealing with the side effects of ADT – this is true when told you have advanced prostate cancer and that you will need to stay on some form of testosterone lowering drug for the rest of your life to prevent the cancer from spreading and to slow its progression.
Most men ask – what is that going to look like? For me the loss of testosterone was something you just cannot get your head around. The loss of muscle mass and general fatigue come to mind. Living with cancer has changed how I approach each day! Long term plans become six months or less. We all need to clear our minds and try hard to “Live in the moment”!
The Hike…
Moving along the Coast to Rialto Beach (Day 4)
First let it be known that this hike was one I had planned on doing alone. I started thinking about it around the end of this past year, 2018. Knowing full well that building muscle and endurance was going to be an issue while having no testosterone levels. Without question the love of the outdoors and hiking was going to help push me along. Approximately 150 miles was planned with two segments (a coastal area and then an area of rain forest and above the tree line); the first part being 38 miles along the coast and the second 107 miles from the Hoh Rainforest trailhead to my uncle’s home in Brinnon, Washington.
I cannot remember when my little sister asked if she could go along but I remember thinking, “She has no idea what a yes reply might mean”. After all she had never hiked or camped for any period of time and for sure never carried 45 pounds of camping gear and food plus a bear canister on her back for 12 days. I was concerned but said yes, knowing full well that she would need to start training and get some good gear.
The fact that she wanted to go was beautiful but it did change how I would approach the hike. Getting ready for the hike became the mission and planning …… well let us just say I wanted to provide a couple of outs in case of bad weather or a change of mind. As the months passed and we were close to the departure date it became clear that she was taking the hike serious with training and gear acquisition. In my head I was thinking she may just hike my butt into the ground and for this reason I too started to train like crazy. The fact that my little sister was making such great efforts forced me to step up my own game and get myself in shape.
Let it be known that getting up off your butt and pushing yourself to extremes is still possible for anyone on ADT.Live in the moment and work hard to live as full a life as possible.
Hoh Rainforest (day 7)
The Hoh Rainforest is amazing… it is an easy hike and can be done by anyone. Located just a short drive from Forks, Washington in the northwest corner of the state, it is relatively flat; it has the most amazing green moss covered trees with ferns and grasses that appear from a distance to be a soft and inviting blanket. For sure it was the most pleasant hiking part of our trip with ideal camping locations along the Hoh river and great fishing. Along the trail we were able to spot small herds of elk, and deer in the early morning around our campsites plus beautiful views of Mt Olympus off in the distance when the thick pacific mist lifted.
Mt Olympus (day 9)
After the relative ease of hiking in the rain forest with wide open gravel walkways designed to allow for 100’s of day hikers, we started the more difficult part of the trip. Our first day – 4850 feet up the mountain in just five miles, and then another 4 miles along some of the narrow passages of the Seven Lakes area. This part of the trip was a challenge. It’s truly a difficult hike and one that requires your complete attention. A missed step and you could end up at the bottom of the mountain. The views the next morning were some of the most amazing above tree line views i have ever seen. Mt Olympus and a string of others all uncovered in early morning.
Mtn Townsend along the East Side (day 14)
Just north of Brinnon, Washington along the area known as Hoods Canal is Mt Townsend. It looks down on the Canal, Mt Rainier, Victoria BC and the Straits of Salish Sea; and I was lucky enough to view it all on a sunny day.
