Hello all,
Below is the PDQ summary of Carol, the simulated patient from last week's workshop.
Hope it helps as you develop your own!
Carol: 50-year-old married woman with early-stage breast cancer
Carol describes feeling overwhelmed by her recent diagnosis and cancer treatment options. She realizes she has options for treatment, but she is unsure whether the wants to take part in the long process that may have “no guarantees” for long-term success. She has friends who have been diagnosed with cancer and is still deciding if she wants to embark on a similar path given the potential detrimental effect on her overall quality of life.
When considering treatment, she notes how being “surrounded by beauty” will give her strength. She is particularly drawn to plants and had a side business for a few years arranging plant displays for local coffee shops. She loves the outdoors and knows that the beauty of nature will need to be front and center in her care (plants in her hospital room, at home, etc.), otherwise she will feel “suffocated” in a sterile, medicalized environment.
Regarding current worries, Carol is concerned about her husband’s long-term immigration plan. She has been his advocate as they completed his Visa to live and work in the U.S. She is concerned about his possible deportation if she becomes too ill to work on his behalf. As for the care team, Carol hopes a spiritual counselor can be present. She affiliates with the Episcopalian religion but views herself as globally spiritual. She would like to discuss ways to stay close to her higher power during this process and views a spiritual advisor as critical to her treatment success.
Hi everone,
I hope you are having a lovely week. Here are some responses to question that were in the chat, which I just didn't have a chance to get to. Hope they are helpful.
Look forward to seeing all of you on Thursday.
Harvey
Eleni
What about the use of PDI (the insights and effects in the care we provide) in patients who have an incurable non -cancerous disease but they are not yet under PC, they have a year at least or longer of life expectancy with difficulties in prognostication.
Important question. The PDI is now being used as one of the primary measures of dignity related distress in healthcare. While it was developed in palliative care, it was never meant to be cancer specific, but rather something that could measure distress across various conditions and healthcare circumstances. Our own research group has used the PDI in outpatient oncology, recruiting patients across various stages and disease site groups. I am also aware of studies that have applied this to non-cancer patients, including ALS, chronic renal disease, and COPD. Other studies have applied it to the frail elderly, while others have looked at it in the context of psychiatric disorders. As an aside, it has been translated into about twelve languages, so its uptake internationally has been substantive.
Dina
How can we create a movement to normalize your vision?
There is certainly a great deal of work being done by many people around the world to promote person-centered care; and there are also various innovations for addressing distress towards the end of life (you might want to look up work by Breitbart; and Rodin as good examples of how others are addressing this issue). That said, it you find the work on dignity is useful and engaging—particularly if it helps you look after your patients and their families—I would encourage you to share what you’ve learned with others. All of my articles are available in the public domain, and there is nothing that I spoke about that isn’t contained in one of my many publications. You can use these papers, and your insights, to inform your teaching, your clinical work, and whatever research you might be contemplating doing. Also, social media is a powerful platform. Feel free to post whatever insights you’ve gained on Twitter, LinkedIn, Instagram, etc. Slowly but surely, perhaps all of this can help raise the bar on person centered care and transform the culture of medicine.
Alazne
It is demonstrated that dignity therapy may decrease patients Desire to die. Do you think PDQ may also work?
I don’t think there have been any studies that have specifically looked at how the PDQ influences desire for death. However, remember, the PDQ is just a convenient way of introducing the topic of personhood within clinical care. In other words, it’s a way of making people feel that they matter, that they are more than their illness, and helps them feel more connected with their healthcare provider.
I recently discovered an amazing study, Trevino KM, Abbott CH, Fisch MJ, Friedlander RJ, Duberstein PR, Prigerson HG. Patient-oncologist alliance as protection against suicidal ideation in young adults with advanced cancer. Cancer. 2014 Aug 1;120(15):2272-81. doi: 10.1002/cncr.28740. I will spare you the details, but here is what they concluded: “ The patient-oncologist alliance was found to be a robust predictor of suicidal ideation and provided better protection against suicidal ideation than mental health interventions, including psychotropic medications. Oncologists may significantly influence patients' mental health and may benefit from training and guidance in building strong alliances with their young adult patients.”
I rest my case. Finding ways of connecting with people, making them feel like unique individuals, and hence fostering a therapeutic alliance, can be life sustaining.
Bia
How does the medical system look at Dignity Therapy? Is it well accepted?
I think Dignity Therapy is currently well accepted within palliative care. At this time, it is the most studied psychological palliative care intervention, and there are scores in not hundreds of publications from around the world reporting how it is being implemented and the impact it is having. It is also cited in most if not all major comprehensive palliative care textbooks that cover psychosocial care for patients nearing end of life.
The problems with Dignity Therapy aren’t about acceptability in terms of the current body of evidence. The challenges, which we will discuss in the next two sessions, have to do with logistics, training, and resources required to support a Dignity Therapy program.
Stephanie
I’m wondering if there is a difference between individuals/families being treated at home vs in a healthcare facility in regards to their sense of dignity in care and being known and understood by their healthcare providers?
Your question is consistent with my impressions and clinical experience. There is something about walking into the home of a patient that insists that they be seen; that personhood be acknowledged, and that they are more than just a patient. This reminds me of the Escher painting I showed last week, with him surrounded by his books, photographs, and paintings. It is harder to ignore who someone is when they are in their own personal environment, as opposed to the generic and usually stark institutional setting that strips away individuality.
j.
I feel like so much is about slowing down our care and just being present in the moment. That makes people feel seen heard and important.
I could not agree with you more. It is a very powerful idea. Being fully present and in the moment. It doesn’t need to take a lot of time; and it’s not particularly complicated. But when we are caught up in the business of providing care, there’s an inclination to move quickly, ever mindful that there just aren’t enough hours in the day. But the truth is, if there is so little time, why not be fully present for the time we are together? Complete, undivided attention. No distractions. Ignoring your phone. Bring your mind and focus on here and now. Remember I talked about evidence showing how the very act of sitting shifted the perception of patients regarding the length, and their satisfaction, with the healthcare encounter?
And let’s not forget the story of Jim’s nurse, who sat down beside his bed, took off her shoes, and talked. He loved her for that.
Charles
Do you think that PHIA (Personal Health Information Act) takes away from Dignity Care because PHIA only allows me to address and know about/ask about my specific involvement in the patient’s care?
I would say this comes down to how narrowly we choose to define medical care. Recall my example of a dialysis nurse who came to see her patients as ‘kidneys on legs’. With that kind of mindset, can you really deliver person-centered care? Think about the role play Dr. Montross and I did, in which the patient, Carol, told us not only about her cancer diagnosis, but of her sensibilities around things related to beauty and her worries about her husband’s immigration status, particularly in the event of her death. In the absence of knowing this information, can we really claim to offer person-centered care?
I would challenge all of us to think about medical care more broadly and affirm that the ABCDs—the humanities of care—are core efficiencies all of us must take responsibility for. That being the case, I do not think asking questions about personhood violates confidentiality or oversteps boundaries, but is a validation of who they are.
This week I have included my article, The Secret’s Out: Patients Are People with Feelings that Matter. Looking forward to our next session on Thursday.
Hello. I had a question about advocacy and positioning Dr. Chochinov in a leadership role to support greater death and loss literacy. Until there is greater understanding and support for end of life care and an appreciation for grief and loss, these kinds of interventions will not ripple out the way that could maximize impact and reduce needless suffering. I am curious how Dr. Chochinov would respond to this and what efforts have already been made to have this incredible human become a 'poster child' for Dying with Dignity. With gratitude.
Dina
Hello Dina,
Thank you for your very kind words. I wonder if I may be getting too old to be a 'poster child' for any cause whatsoever!
That said, I am interested in doing all I can to spread the word on dying with dignity, and dignity in care. Everyone with patient contact must understand the incredible influence they have on shaping patient experience. Running this workshop is one way of trying to get the word out; but for it to be effective, my hope is that each of you will be emissaries of this approach to patient care.
Perhaps we can pick up this discussion in our last session, as we plan to talk about implementation strategies, which, now that you have raised it, should include consciousness raising and disseminating dignity in care.
Harvey
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