What really matters at the end life? How do we help healthcare providers develop the skills to have these conversations with patients and families so we know more about their hopes and fears and their choices for end-of-life care. and her team have been working with the Serious Illness Care Program (SICP) in Sweden since 2017.
According to , The Serious Illness Conversation Guide serves as a framework for physicians, nurses, social workers, chaplains, allied health professionals, and other clinicians to explore topics that are crucial to gaining a full understanding about and honoring what is most important to patients. In clinical trials, the program results in more, earlier, and better serious illness conversations and reduction in anxiety and depression for patients. Research also demonstrates that the program is associated with improvements in patient and clinician experience and reductions in total medical expenses.
Earlier this year in Montreal, Devon Phillips met with Anna Sandgren, RN, PhD, Associate Professor and Director of the and her colleagues Sofia Andersson, PhD, RN, and Susanna Pussa, also from Center for Collaborative Palliative Care, at Linnaeus University.
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Devon Phillips (DP): Tell me about the serious illness care program and why it is necessary.
Anna Sandgren and colleagues (AS): A lot of patients with serious illnesses are not talking with physicians or nurses about what's important to them. And health care professionals don't ask the patients. And even if we ask the patients, it happens too late in the patient鈥檚 trajectory. This program is a good way to start the conversation earlier, when patients are not too sick. We want to know what's important for patients, their goals and wishes, so we can form their future care, according to their wishes.
DP: What kind of information do you gather in a serious illness conversation? What does it tell you?
AS: We want to know how they are, as well as how they have handled difficulties in their life before. This could be helpful for them in the future when they're getting sicker. We help them focus on strengths, previous accomplishments, or challenges. We also may focus on the health promoting aspects. Maybe the patient wants to say no to a treatment because they want to go to a wedding or be home with the family. Also, we need to know where the person wants to be taken care of in the last months- home, hospital, nursing home? We are not always good at talking with family members either; serious illness also includes family members.
DP: Who has this conversation with the patient?
AS: It could be the physician, the nurse, or the social worker. It could be decided among the team as well, and it could also be that one of them starts and the other one continues the conversation. Documentation is really important, so we don鈥檛 say the same thing all over again to patients.
DP: This is a good point. People might think there's one conversation, but in fact there are multiple conversations.
AS: Yes, it's a series of conversations. One important phrase is 鈥渉ope for the best and prepare for the worst.鈥� Sometimes healthcare professionals only focus on the negative, the prognosis, but patients don't have only one perspective in mind - they hope for things, but at the same time, they know that they might not happen. So we discuss what they hope for if everything goes well, and if it doesn't, we ask, what do you think about that? What are your fears? Because the reality is that patients are often are in these dual tracks. This creates a safe space, so people don't feel threatened.
Many clinicians hesitate to having these conversations because they are afraid of taking away the patient鈥檚 hope. But even though you have a bad prognosis, you can still have hope. It doesn't have to be an either-or situation.
DP: Sounds like these conversations give the patients the opportunity to reflect on their situation.
AS: Patients often do not have the words to name how they feel. They need the opportunity to tell their story, put their feelings into words. In these conversations, you are being met as a person. You are not just the treatment.
You are heard. You are seen.
And the goal is not just about the treatments or medicine; it can be personal. We had one patient who said, 鈥渢his is the most personal conversation I鈥檝e had with my physician鈥�.
AS: The serious illness care program comes from Ariadne Lab in Boston. We brought it to Sweden in 2016, adjusted the model, and then implemented the program. In the first phase we implemented it in 20 different units and we held training for specialist physicians in different units - surgical, medical, and oncology, and in both in-patient and out-patient clinics. But then we saw that we also needed to include the whole team. So, we included nurses, all the physicians in the different clinics and outpatient wards, patients, family members and other healthcare professionals during that adaptation process.
We really learned a lot. We have published around the organization and readiness to implement the program, and what could be hindrances and facilitators. We learned that leadership engagement is really important when implementing the program and that it鈥檚 important to train the whole team at the same time.
We have workshops and we train on the use of the guide, which patients will benefit, and how to document the conversations, not only for themselves, but for the patient to be able to read in the medical record, but also for the other healthcare professionals, the team, to continue these conversations. We collaborated with the researchers from Ariadne labs in Boston. We published about core elements in serious illness conversations and what core competencies clinicians should have to effectively engage in serious illness conversation.
DP: Is there a perception that clinicians don鈥檛 have the time for these conversations?
AS: Sometimes healthcare professionals say they don't have time or the resources to have these conversations. But it's not just about the time. It's more about attitude. You have to be totally focused on the patient even if you have just five minutes. When the patient says something to you, you can say, 鈥淚鈥檓 listening to what you鈥檙e saying now鈥�.
DP: When this connectedness is built, how does it support people?
AS: If the patient feels safe and connected, you can say almost anything and it will be a good conversation. You need trust to have the conversation.
Normally patients are quite used to coming to the healthcare professionals to talk about the illness and the treatment etc. But they are not used to talking about what actually matters to them. When we focus on what matters to them, we listen to them. It helps us to explore their understanding of the illness, and this can be helpful for us when talking about future care. So, it goes both ways, both for the patients and for the healthcare professionals.
For example, If I'm a nurse and I鈥檓 giving the patient medication, and if the patient says something, I can be there listening and answering them and doing the treatment at the same time. We don't lose any time 鈥� we can take the opportunities as they arise.
When the patients say something like 鈥渄o you think that I'm going to be able to meet my grandson that鈥檚 coming?鈥�, we tend to shut these conversations down. Some healthcare professionals think that they need to have answers all the time. But you don't have to have the answers. You can return the question: 鈥淲hat do you think? What do you hope for?鈥�. If you explore, you can see that the patient actually knows that they might not be alive for this event.
That's why this program is so important. It helps physicians and nurses feel safe to have these conversations.
DP: The adaptation of the programme to the Swedish context started in 2016. Where are you with the project now?
AS: We started implementing it in hospitals. We are now working with different national groups because the serious illness guide is part of the national guidelines for palliative care. Our first goal is better care for patients and we want physicians and nurses to hold these conversations.
DP: Looking to the future regarding funding, goals, partnerships- where are you headed?
AS: We have funding from the until the end of 2025. It's the family who founded IKEA. We need to learn which strategies are important to make this programme sustainable 鈥� we don鈥檛 want to just train clinicians - we need to follow up and see how to implement it effectively.
We are also part of the International Collaborative for the Best Care for the Dying Person which includes 17 member countries. Some of these countries are working together to see how we can implement this program in Europe. It鈥檚 all very exciting.
View SIC Guide听 (in English)
More information about the Serious Illness Care Program:
Center for Collaborative Palliative Care , English document and
International Collaborative for the Best Care for the Dying Person:
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