Unanswered chat questions from last week ...
I will be responding to your questions from last week. Will post responses as I complete them over the next day or two.
Looking forward to seeing all of you on Thursday ... I can't believe this is our last session!
Here are a few responses; more to come.
Will the slides be shared with us?
Yes, Amanda will be sending out the slides for the first two sessions with this week’s reading materials.
For patients with communication impairments and loss of dexterity (for example a patient with ALS) if they have access to an eye gaze control system or so forth, can this still be implemented/have you?
I have personally not had a patient who has used that particular technology to participate in Dignity Therapy. I have had patients with ALS who have maintained the ability to use a keyboard; and have sent them the electronic file of their interview so that they could embellish/edit at their own pace. There are other researchers whose work has focused on Dignity Therapy and neurodegenerative disorders. Here are a couple of reference you may want to check out:
- Bentley B, O'Connor M, Kane R, Breen LJ. Feasibility, acceptability, and potential effectiveness of dignity therapy for people with motor neurone disease. PLoS One. 2014 May 9;9(5):e96888.
- Aoun SM, Chochinov HM, Kristjanson LJ. Dignity therapy for people with motor neuron disease and their family caregivers: a feasibility study. J Palliat Med. 2015;18:31-7.
Curious to hear a little more about your study applying DT to personal care home situations. Were these shared with staff? I would fear the final piece applied to care (in Canada) could set ppl up for disappointment, perhaps (i.e., formal care giver actions do not change in receipt of personal storied)?
Really interesting question Marissa. First off, Dignity Therapy legacy/generativity documents were only shared with people when participants gave explicit permission to do so. And although this is anecdotal, my recollection is that residents in seniors homes weren’t quite as open to sharing this information as freely as participants engaging in Dignity Therapy in the palliative care setting. I’ve not sorted that through or pursued it further, but clearly there are issues related to trust and willingness for self-disclosure that are different across these two care settings.
Your point about disappointment is also important. In my experience, anytime we ask patients for information, it raises an expectation that that information will either be used or at the very least acknowledged. Eliciting information without any apparent response or recognition of what’s been disclosure (I’m in pain; I’m afraid; I’m worried) is apt to be experienced as a rejection or disavowal of their experience.
Here is a reference for the study we did on Dignity Therapy in personal care homes:
- Chochinov HM, Cann B, Cullihall K, Kristjanson L, Harlos M, McClement SE, Hack TF, Hassard T. Dignity therapy: a feasibility study of elders in long-term care. Palliat Support Care. 2012;10:3-15.
Has Dignity Therapy been tried at an earlier stage (than the very end of life) of a chronic, incurable, progressive process? Do you think there could be different uptake, content and effects (i.e. to be used as a tool of "Well Being" and healing at an earlier time before the final PC stages).
I believed I touched on this during our session, but the answer is yes. Dignity Therapy can be, and has been, introduced earlier in the disease trajectory, at a time when patients feel life has taken them to a place where reflection, reminiscence and sharing through the creation of legacy feel meaningful and appropriate. You will notice that the Dignity Therapy Question Framework does not use the word death and approaching death need not be the reason patients consider taking this on. The idea or existential readiness, as I described in our last session, has great utility in determining which patients are ready to engage in this unique, brief, individual therapeutic intervention.
Where exactly lies the difference between Q7 and Q8: words of guidance/advice and words to prepare them for the future?
Here are the full two questions you are referring to:
“What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your (son, daughter, husband, wife, parents, others)?”
- “Are there words or perhaps even instructions you would like to offer your family to help prepare them for the future?”
Admittedly, there may be some overlap between these two questions, although I don’t see that a problem; sometimes a similar question, put a slightly different way, can elicit rich and unique responses depending how the patient interprets its meaning. That said, the intent of the first question is really to provide a reflection on things that they have learned, wisdom they have gleaned, insights they have gained that the bereft may carry forward in guiding their own lives. The second question about instruction and preparing them for the future was crafted to elicit responses that would prepare the soon to be bereft any insights that might be helpful in navigating a world without them.
What are the challenges a therapist could face during the therapy process?
There are of course many challenges the therapist faces, several which were discussed at our last session. As the therapist;
- it is your job to facilitate a conversation focused on legacy.
- it is your job to redirect or provide structure when the patient loses sight of the primary goal of generating a legacy.
- it is your job to time manage throughout the interview
- it is your responsibility to address disclosures that may be harmful to Dignity Therapy recipients.
- it is your responsibility to let go of other therapeutic goals or techniques that you may be more accustomed to, keeping in mind that the goal of Dignity Therapy is to facilitate the patient in being able to share what they need said at this critical time in their life.
SAY TUNED ... MORE RESPONSES TO FOLLOW!
Can you speak to the connection between participating in dignity therapy and goals of care conversations? Do you find, or have you seen other studies that found, a connection between participating in dignity therapy and making treatment choices in line with their dignity or legacy?
I believe that anything we can do to help patients assert who they are as persons, facilitates alignment between the care they receive and their stated goals of care. I am aware of an ongoing study looking at associations between taking part in Dignity Therapy and choices for life sustaining options as death nears. These results should be published within the year.
I would ask about translating, and cultural sensitivity of the PDI... I am wondering how valid is the direct translation (to Finnish) versus a larger qualitative study what dignity means to in our country and culture...
Excellent question. As I mentioned in our last session, Dignity Therapy is being practiced/implemented in countries worldwide. Of course, cultural sensitivity must always be considered; what is interesting is how people around the world are finding value in being able to convey who they are, what they want known or remembered, and what legacy they would like to leave by way of Dignity Therapy. That said, I certainly understand that the original questions were set in Western culture, and adaptations of the actual wording may be required – and in my experience, is easily accomplished. Take the example I gave last week of Denmark, where patients told us that the word ‘pride’ was easily conflated with ‘being boastful’ and wasn’t something that most Danes would feel comfortable with. As a result, the question was reworded, focusing on things that were important, significant or that they would want remembered.
I think a detailed study of how dignity is perceived within a particular culture would be interesting and worth doing. However, if you are looking to implement Dignity Therapy any time soon, I would suggest you consider focus groups, or finding key informants, representative of patients, families, and healthcare providers, to vet the current Dignity Therapy Question Framework, determining how this needs to be revised in order to be culturally informed and sensitive.
As language is so important … I am curious about the choice of the word Generativity Document … over maybe something more accessible like LEAVING A LEGACY … is there a reason for this way of framing and might you be open to us using something different?
The word generativity is technical and was borrowed from the work of Erik Erickson. That said, I do not use this term with patients. More accessible language, such as legacy document or a written document containing things you want said and know, is far more preferable.
Is there a way to capture the responses in a way that still has the same benefits but takes less time? I attempted to initiate DT with a client but found it very hard to find time to transcribe and produce the written document. Essentially, I am looking for shortcuts:)
We might get a chance to talk about this on Thursday; that is, how does an individual or program arrange the resources necessary to make this intervention viable? Voice recognition software is improving; and if the document needs to be typed, there are transcription services that can do this in much less time that most of us are able to manage. While the PDQ is not a substitute for Dignity Therapy (and does not involved the creation of legacy), it is a brief was of being sure that personhood is placed on the clinical radar for all to see and acknowledge.
How “far” do you “push” patients to participate in dignity in care….knowing the benefit that can be received?
I don’t really ‘push’ Dignity Therapy. While we know if can have benefits, there needs to be a goodness of fit between the patient and this way of addressing generativity. If after the patient has received a full explanation and is disinclined, I tend to go with that.
Have you found a special value in being an oral interview instead of writing the answers by the patients or the proxis?
In my/our experience, the value of Dignity Therapy being an ‘oral interview’, is that this makes doing it something that requires least effort relative to being a written intervention. And while only a minority of patients, especially those who are very ill, will retain the ability or the desire to write fulsome responses to questions about personhood, most patients, even those who are far advanced in their illness course retain the ability to speak to issues that are important to them.
I'm about to begin facilitating a meaning-centred group therapy program for people pursing MAID and already finding that the MAID experience shifts how this program must be facilitated, how the questions are received. The assessment tools don't seem to fit quite right either when will to live is a key measure of the therapy's success. Also hopelessness takes on a dimension different from participants with advanced cancer (for example) but not pursuing MAID. I'm very curious about how to adapt these therapies for the unique MAID experience.
We discussed this somewhat last week. My sense is that these interventions likely easily apply to patients seeking MAiD. The challenge is coming up with the appropriate outcome measures. I also think that we need to consider not only standardized psychometrics, but need to include qualitative inquire in order to understand the nuances of meaning-making, or the creation of legacy, in the context of life ending decisions.
What´s the difference between unmet spiritual need and low (or missing) sense of dignity in Carol´s case?
If you look at the Model of Dignity in the Terminally Ill, you will find that spirituality appears within the model under Dignity Conserving Practices. As such, when I think of dignity, I often reflect on the model and it various elements. Spirituality is one such part; hence, unmet spiritual need falls under the rubric of fractured dignity. And while these distinctions are important in terms of theory and designing outcome measures for clinical trials, when it comes to conducting Dignity Therapy in the face of spiritual challenges or confrontation of personal dignity, is general approach is identical.
As a nurse who works in an out patient chemo floor its hard to get a PDQ done with a patient but I truly believe that it is out interactions day in day out of week in week out and in some cases year in and year out that we grow to know these people and their families allowing us to in essence provide them with dignity care by asking about their lives families as well as saying hey you don't look ok today is something going on or what has changed
Asking patients what we need to know about them as a person to take the best care of them possible doesn’t necessarily take a lot of time, albeit does dive deep. That said, your point is well taken. It is important to remind ourselves that the purpose of the PDQ is to elicit personhood. But that is not to say that the PDQ is or should be the only way of putting personhood on our clinical radar. Like jromanoff says, we come to know our patients over time, and can sometimes elicit these sorts of insights with the tiniest of nuances, showing we are open to knowing them as people and not exclusively as patients.
Do you have much of an opportunity to share the information you gain through treatment/day onc across to an inpatient setting?
We haven’t had much opportunity to address this, given our studies have been confined to particular healthcare settings. Recently with our ICU study, we found ourselves trying to find a way of transferring PDQ information to the medical ward, in those instances when people would be moved from intensive care. Ultimately, we need to find a way of incorporating the PDQ (or personhood specific information) into patients’ electronic charts that would follow them wherever they go. Surely, it we can do this is feasible for blood type, allergies, chronic health conditions, medications, and so on, personhood ought find its way onto that registry of critical information.
I'm curious about giving the tape recording to family to hear their loved one's voice? I've been told there's concerns about how the voice may sound, when they're unwell, but with patients such as this wonderful woman, wouldn't it be a wonderful keepsake to hear her voice? Maybe edited? Maybe in addition to the written document?
Important question that I believe we covered last session. Happy to revisit this on Thursday if people want to explore this further.
I’m curious if you tape the DT sessions. I worry about taking notes and disconnecting?
Yes, the sessions are entirely recorded. I do not take notes during Dignity Therapy, although I take detailed notes during the framing interview. I want to be sure I get all the names right, understand the key connections between all the players; and have a general sense of what their agenda is in undertaking this therapeutic task. I think I mentioned it last time, but now that I have been doing Dignity Therapy by way of Zoom (until in person becomes an option), I have used both an audio recorder and the Zoom record function.
There are so many people today who either do not actually have family or are estranged from them. Here in the US there is an online support group for "elder orphans" although I don't like that term. How would you suggest framing this for them? Not having family may be a point of sadness for them so presenting it as a legacy may be difficult.
So long as the patient feels that creating a tangible document is desirable/relevant/comforting, it makes sense to move forward, despite the absence of family. We have had such patients who requested their document be left to their health care provider(s), to their hospice, etc. By the way, we define family broadly as those who care, so recipients may be friends, neighbors, colleagues, etc. However, when the patient says they have no one that they would want to leave a document for, and the creation of such a document holds no allure, then I think we need to reconsider what form of support would be in their best interest. The early work of Robert Butler examined the importance of reminiscence; and providing people an opportunity to reflect on their lives, recall pivotal moments, come to summative insights that help them make sense of their lives, can be very therapeutic. Although that is not Dignity Therapy, it may be exactly what best serves the patient’s needs.
How do these stories get to the intended people?
We always advise people to give copies of their document to the intended recipients as soon as it is completed. This gives everyone a chance to read it, and ideally and chance to engage in conversations that may come forward because of it. Once the patient is gone, of course, no such opportunity exists. Usually there is at least one primary contact; and we make as many copies – within reason – that patients want to distribute to those it’s intended for.
There was a story line on greys anatomy where a patient who was faced with the possibility of death sent videos to all the people in his life to say what he was never able to say in real life. Again I know this is a show but it was his way of saying his peace
If Dignity Therapy makes it into the storyline of daytime tv, or a Hollywood blockbuster, I’m requesting the role of Harvey Chochinov be taken on by George Clooney, Mandy Patinkin (if George is unavailable), or Kevin Kline.
How do you address documenting the Dignity Therapy summary in the medical record given the 21st Century Cures Act?
I believe that information about Dignity Therapy could be managed in terms of documentation the way other confidential information is handled i.e., brief and without disclosing unnecessary detail, e.g. The patient took part in Dignity Therapy, which was completed to their satisfaction. Legacy documents have been assembled and distributed to friends and family as specified by the patient.
SEE YOU ALL ON THURSDAY!!