Fast Fact Released: #362 Parkinson’s Disease: Part 2 Palliation For Common Non-Motor Symptoms. Thanks to the authors, Danny Estupinan, MD, Alva Roche’-Green, MD, Maisha Robinson, MD, and Robert P. Shannon, MD for this new addition to the Fast Fact Library.
Fast Fact #361 has been released- Parkinson’s Disease: Part 1 Disease Trajectory. Thanks to the authors, Danny Estupinan, MD, Alva Roche’-Green, MD, Maisha Robinson, MD, and Robert P. Shannon, MD for this new addition to the Fast Fact Library.
Fast Fact #360 has been released: The Surprise Questions as a Prognostic Tool
Thanks to the authors, Hillary Me Lum and Kate Jennings, for this new addition to the Fast Fact Library.
Many experts have advocated that hospital systems utilize system-based practices to encourage clinicians to utilize the surprise question, which is “would I be surprised if this patient died in 12 months based on their underlying condition?”, to identify inpatients at risk of having unmet palliative care needs. This Fast Fact reviews the evidence behind the Surprise Question as well as offering best practices for implementation. For further information on how to implement generalist and specialist level palliative care throughout a health system, members should log into the PCNOW webpage and go to the Resources link. There you will find much more information on how to systematically utilize the surprise question and other primary palliative care tools systematically throughout your health system.
Fast Fact #359 has been released: Palliative Care Issues for Transfusion-Dependent Patients
Thanks to the authors, Mansour Gergi, MD, and Maria Aileen Soriano-Pisaturo, MD, for this new addition to the Fast Fact library.
Fast Fact #358 has be released: Non-Oral Routes of Methadone for Analgesia in Palliative Care
Thanks to the authors: Katie Elsass, Sean Marks, and Natalie A Malone
Methadone is a commonly prescribed analgesic for hospice and palliative care patients with terminal medical illnesses. The preferred route of administration is oral methadone, however, clinical circumstances arise frequently in which patients on oral methadone can no longer tolerate an oral route of administration. This Fast Fact reviews pertinent clinical details about the available non-oral routes of methadone. For more information about methadone within the PCNOW website, please see the Rotation to Methadone prescribing protocol within the Clinical Tools and Resources link under Resources. Also see Fast Facts #75, 86, and 171.
Fast Fact #357 has been released: Safety Considerations When Using Opioids for Older Adults.
Thanks to authors Jennifer Pruskowski, PharmD, Rollin Wright, MD, Neal Sprissler, PharmD, and Mamta Bhatnagar, MD for this new addition to the fast fact library.
Fast Fact #356 Pain Management Considerations in Older Adults Thanks to the authors Jennifer Pruskowski, PharmD, Rollin Wright, MD, and Mamta Bhatnagar, MD for this new addition to the fast fact library.
Well the first day of the 7th annual Regional Palliative Care Conference was a success, for me, Connie Basina SSM health Palliative Care RN embedded in the oncology clinic. I have not been in my role an entire year yet so I am quite a newbie at this work and wholeheartedly embraced a chance to learn more.
This conference is the first one I have been able to attend, I am so very pleased I made it with the help of the David Weissman scholarship. Without their support I would only be hearing about it from others. So let me say, please PCNOW, continue to offer this generous leg up for folks like me that otherwise would not have made it. That being said, I was asked to share a few bullet points about what I have learned from the conference. I was able to attend both days and have Thursday under my belt. I always learn so much from Toby Campbell. For anyone that has not heard him present, I highly recommend him, his skill in Palliative interactions seems legendary to me, wow, he makes the skills look incredibly easy but I am not that naive. An NP I worked with once said, it is simple but NOT easy, isnt that the truth.
So, I guess the first thing I learned is this truly is a skill. It must be developed, practiced and honed. This is only done by practice and allowing yourself to make mistakes, not beating yourself up if you make a misstep or don’t come across as therapeutic as you had hoped. The patient will help you to know if you are on the right track. Also don’t avoid role playing, as it is a great way to learn. The other “simple” skill is listening, but actively, it is an art, that of listening, I mean really listening. Once you master this skill and get comfortable with silence many other things are much easier.
I also learned a simple statement that might help me open the door for someone, “ Would you like to talk about what this means?” That is powerful, and gentle and shows we aren’t going to shy away from the tough discussions that some patients are needing. That is quite a privilege for me to be a part of that. I also enjoyed the session about mental health in the Palliative setting. I learned about the prevalence of depression and grief in the terminally ill population, and they are not one in the same. I also learned that acceptance is not necessarily the end result of our talks with patients. That may never be and that is okay.
Well, as you could guess, I could go on and on, but I better wrap this up, I need to get to the Friday sessions that start in about an hour. Thanks for listening about my journey!
The final day of the Conference was just as invigorating as the first. We again had amazing speakers and I was surrounded by some of the best practitioners I have ever met. I certainly realize that no matter how long you have been at this type of care we never want to stop learning how to best deliver it!
I learned about the big picture benefits when Palliative care is implemented early from improved symptom management to decreased hospital costs to decreasing hospitalizations all together. Despite how amazing and rewarding Palliative Care is as a specialty there are limited staff resources.
The program also requires care and encouragement to grow. We can as a whole, improve the awareness of Palliative Care through advocacy, cultivating the workforce and engaging in research. We can all foster growth by doing even the smallest things, such as offer for shadowing opportunities to staff interested in how Palliative Care can dove tail with their work and help their patients.
I was also encouraged to hear that Wisconsin gets an “A” for its availability and accessibility to Palliative Care, compared to other states in the Union. My dedication to this growing specialty remains strong and this conference helped to remind me of why.
I have enjoyed the topics offered and feel that what I have learned here will enrich the work I am carrying out here at SSM Oncology. Thanks to PCNOW for making this opportunity happen for me. Hope to see you next year!
I’d like to start by thanking PCNOW for allowing me to participate in this year’s conference through the David Weissman scholarship. What a wonderful opportunity to continue my learning and network with others providing Palliative Care services to patients and their families.
When you are reading this, I will be on vacation with my family viewing the beautiful landscape and waters in the great state of Alaska. Family is one of the most cherished blessings I have in my life. Working in the palliative care field has taught me to take time with those you love.
Like most other conference participants, I worked part of the day on Thursday and then drove down to Lake Geneva. It was wonderful being able to gather and meet other members of our systems’ Palliative Care team as well as other conference attendees over snacks and dinner. The ability to network with others doing similar work is so valuable as it reminds me that we are part of a group of people working to improve the quality of life with those facing chronic and life ending illnesses. We don’t work in isolation, but rather as a team to support one another.
There were a couple of themes that I’d like to share as a framework that fit in with the name of our organization, PCNOW: Passion, Compassion, Now, Opportunity and Wisdom.
Passion is a word that came to mind when listening to a case study about a medical student that was diagnosed with a serious illness and was faced with now being patient vs the doctor that he was training to become. I left that session being reminded to live my life with passion. Live each day fully. Be present in the moment. We don’t know what life has in store for us, just as that young medical student didn’t, so whatever is most important, pursue it with passion.
Compassion is a word that was used by one of the speakers in regard to how we approach our work with patients. Compassion for others is a critical attribute to possess. When plans change, tapping into our compassion helps us to ease some of the stress and sometimes frustration that arises for staff in needing to make adjustments to the changes. Sometimes I struggle to show compassion for myself. I hope to have the words to make a difference in very difficult circumstances, but the truth is sometimes there are no right words, but just being present with compassion in what is most important. The journey we are on with our patients is a sacred journey and they need to figure it out at their pace and in their own way.
Now is the time for doing what’s most important. Life is a precious gift. We don’t have a crystal ball and don’t know what our future may bring, so taking each day and making the most of our time is important. Focusing in on what is the most important things to do can be hard when there are many “distractions” competing for our attention. Do we get caught up in these distractions or do we stay focused on what’s most important to do now? I know this can be a challenge in the midst of hectic days and competing priorities. The “someday” may never happen so living an authentic life. I have learned that living an authentic life can help do what’s most important now.
Opportunity knocks in a variety of ways. When standing at a crossroads, how do you assess that? In Palliative Care we talk about quality of life with our patients. What is important for them and how do they want to spend their time? They have an opportunity to make decisions between treatment options and sometimes are expected to make decisions very quickly when presented with what can be an overload of information during a very emotionally difficult time for them. How do we assist them in thinking through their options for care? How do we provide a sense of support when they choose a plan that is different than what staff and others see as the better options? There is much thought I’ve done about this since length of stays in hospitals are shorter and patients are faced with making difficult decisions. I continue to believe there is great opportunity for Palliative Care to be integrated into primary care and community settings. This provides more time for conversations with people as they journey through managing their health issues and helps to prepare them for decisions they may need to make ahead.
Wisdom is the last word that I have been pondering since being at the conference. I am struck with the amount of wisdom and experience that presenters possess. They share their wisdom in a topic area so we as participants can learn and increase our knowledge. Honestly, there are times that I feel a bit overwhelmed with the information shared as I have so much yet to learn. Each session attended provided me with more medical information and understanding that impacts my work as a Social Worker.
Periodically, something happens that triggers my thoughts back to the conference. The other day I was watching a tv program, “The Talk” while sewing. Oprah Winfrey was talking about the question she asks herself when there is negativity or an issue she’s dealing with. The question was “Are you living the life that you want?” It struck me that this fits right in to the discussions I heard in sessions at the Palliative Care conference.
For me, living an authentic life with a grateful heart helps me to continue to focus on the things that are most important. It brings meaning to what I do. Each day is a new beginning. Living life fully means taking one day at a time and being present in the moment. I tend to be a planner, so this can be a challenge for me.
I thank you for the opportunity to step out of the usual daily routine, meet with colleagues, feel refreshed and help me re-commit to living fully each day.
With gratitude and appreciation,
Susan Scheller Kirby, MSW CSW
No matter what your politics are in the world today, we can all recognize that the Universe has lost a graceful, honest and strong woman this month of April, 2018. Barbara Bush not only left a long legacy of being the First Lady, mother of a president, advocating for improved childhood and adult literacy but her last act may have a long lasting impact on how people choose to not only live their lives but also how they die. Mrs. Bush chose a dignified, comfortable death on her own terms without aggressive measures during her last stage of life. Mrs. Bush chose comfort measures rather than another hospitalization or ICU admission. Comfort measures, what does this mean? Comfort measures is an approach to patient care which focuses on symptom management while avoiding aggressive, disease specific treatment. The goal of comfort care is to allow the patient to have a better quality end of life with a natural death not prolonged by artificial means.
When a person is nearing the end of their life, they, as well as their care team and family, may be struggling with that most difficult question, “when is enough, enough?” This is where open and honest discussions that are ongoing from diagnosis throughout treatment can make all the difference. Discussing all options, True Consent, needs to be a conversation that specialists and primary care providers have at every visit with their patients diagnosed with life-limiting illness. These discussions may initially be difficult but if you start early in the diagnosis, these conversations can become welcoming, empowering and natural.
How do you start these conversations? An excellent start is asking your patient who was just told that they have a likely terminal illness, “what is your greatest fear?” They may tell you that death is their greatest fear but much of the time, this is not what I hear. The more common responses are fears of pain, nausea, not being able to eat and most commonly is the fear of leaving loved ones, what will be missed, that wedding or baby being born or that graduation. Opening the door to discussing these fears which started the moment you delivered the bad news allows that person to work through the emotions which could plague their treatments. If you do not address these fears early on, they can transform into anxiety, depression, uncontrollable pain and “non-compliance.” Allowing the patient and their family to address these fears early and often can make the journey moving forward a rewarding and beneficial partnership not only for the patient and family but also for the clinicians. Allowing people to face these fears gives them permission to make those difficult decisions early, plan for the end of their life, adjust family events and bucket lists and start to develop goals of care.
Once goal setting happens, the patient-family team feels empowered and have more energy to focus on healing and living. The providers and treatment team, surprisingly, also benefit from this care planning and goal setting because it takes failure out of the discussion and rather allows the focus of treatment to be on allowing the patient and family to work toward life goals and to face these fears together. Sharing some of these fears together in an open and honest communication freeway (the provider worries they may not be able to treat this disease to the point of cure or that the treatment might cause more harm than good) opens up new doors to a partnership in the treatment plan moving forward; the gift of “True Consent.” By having true consent, there are no longer winners and losers, failures and successes but rather moments which will come and be dealt with on a day by day basis. Taking each day as they come with a plan in mind of the worst and best case scenarios already considered allows for relief, oscillating goals and planning for the future. Instead of focusing on the 1-2% chance of cure, you can focus on the goal of quality for as long as possible and prognosis becomes a time range rather than trying to come up with a specific time (using weeks to months or months to years rather than saying, “on average people live 6 months with this diagnosis.”)
I do understand that the hospice and palliative community would have preferred that hospice be involved in Mrs. Bush’s end-of-life plan but none of us were there at her goal setting and plans of care. It may be that she had hired private hospice caregivers to allow her to have comfort measures on her own terms or she may have had a personal desire to die with specific people present with whom she had worked for many years. It is really none of our business what decisions she made. She chose to allow the information about her decision on comfort measures to be shared with the world. None of us were there for that discussion but we can all appreciate the fact that she made it very clear she was going live the end of her life the way that she lived all of her life, independently, on her own terms and with great strength and grace.
We all need to thank Barbara Bush for what she has done for palliative medicine. Her graceful death, while choosing comfort measures, will have a positive impact on health care and all of our lives for years to come and may help us reframe the conversations we all have or need to have with our patients.