Rare Disease Report

Constructing A Particular Patient Perspective In Tomasz Śliwiński's "Our Curse"

FEBRUARY 17, 2015

The “patient perspective” is valuable these days: legislators and regulators want it, pharmaceutical manufacturers and device makers want it, health care providers and payers want it.  But what particular patient perspective do they want? Is it the perspective of the new parent with a sick child who will do anything to keep the baby alive or the seasoned parent who has adapted to a new normal and will only want treatments that do not cause adverse events? Is it the perspective of patients who want treatments that cure diseases or patients who want treatments that halt progression and leave and acceptable lifestyles? These are just a few of the many perspectives that could be generated from one rare disease or from one patient or parent. Therefore, before patient communities provide their patient prospective, they need to consider the message they are sending and who is receiving it.
Tomasz Śliwiński’s Oscar-nominated short documentary film, “Our Curse,” is an excellent example of how a patient perspective can be constructed with a very defined scope and very fine details. The documentary is instructive to patients and patient groups presenting patient perspectives in response to different types of inquiries and opportunities.

Creating a Particular Patient Perspective in “Our Curse”

Tomasz Śliwiński and Magda Hueckel learned very soon after their son Leo was born that he has the potentially life-threatening condition called congenital central hypoventilation syndrome (CCHS), known also as “Ondine’s Curse.” Because he could stop breathing at any moment, Leo was put on a ventilator, and he would always need to be on a ventilator at night while sleeping at least. Tomasz and Magda had to go home without Leo because he needed to remain in the hospital on a ventilator. Tomasz was a film student at the time. He turned the camera on.
For a significant part of the 27-minute film, we see Tomasz and Magda sitting on a loveseat talking to each other at times both before and after Leo is brought home. The conversations reveal their alternating fears and hopes, pessimism and optimism, determination and fatalism about what is to come.
Tomasz: Are you afraid of bringing him back home?
Magda: When I start to think that this will be just the beginning…I am already so exhausted from this fucking hospital.
Tomasz: How do you see this playing out?
Magda: A huge struggle for many years that ends in defeat.
Tomasz: I think this is just something we just need to deal with.
Magda: And I’m also afraid of a lot of things. I’m afraid of all the complications, but I know a lot depends on us and I know that depending on how we treat him, where we take him for rehabilitation, which doctors we use, that it could really turn out fine…but I just can’t accept that he’ll be on a ventilator for the rest of his life…that’s just not an option.
At other moments while they are on the loveseat, we see them quietly experiencing and worrying about every breath the ventilator gives Leo while he sleeps.
Magda: Why is he gasping so loud?
Tomasz: Something is whistling.
Magda: Maybe air is coming out the side.
Tomasz: And this is how it will be for the rest of our life. That gasping sound.
Magda: Oh, you’ll see, it won’t be like that.
During the other parts of the film, we see Tomasz and Magda accommodate Leo’s needs and overcome their fears. We see them learn how to take care of Leo’s tracheotomy and manage his ventilator. We see them handle supplies and suppliers. Balances shift: hope over fear, optimism over pessimism, and determination over fatalism. The scenes move from the loveseat in a dark room to a bright sunlit room, a campground, and a birthday party.
Tomasz: Beautiful gasping.
Magda: I can’t imagine life without him.

Applying Particular Patient Perspectives

Śliwiński gives us a view of two people becoming parents of a child with a rare, life-threatening condition. He focuses his lens, however, on the period just before the baby comes home through the baby’s first birthday. That period generates certain complexities when considered in relation to a period extending to the first five years. Capturing a patient perspective of the first year can be organized as it concerns just getting through the days. Śliwiński, however, goes further to provide a view of the emotional complexities of their experience, which is its own perspective. This short documentary thus generates two patient perspectives in effect from among many possible.
Patients and patient groups can do like Śliwiński and create views that clearly delineate particular perspectives. They can do this by organizing very specific aspects of their predicaments into perspectives that correspond to their objectives and purposes. Patient perspectives could, for example, be formed to address the following: motivating legislators to pass laws addressing specific needs; pushing regulators to approve treatments; persuading donors to contribute to various initiatives; convincing payers to cover certain products, services, and providers; alerting clinicians to their diseases; and educating patients and their communities. The specific perspectives Śliwiński and Hueckel create could be used to recruit scientists to CCHS research, educate parents who have a new baby with CCHS, expand payment policies to cover ancillary equipment requirements and home support services, and attract donations to support research initiatives and care needs.
Much like targeted therapies or precision medicine are becoming more common in medicine, the patient perspective should also be targeted so that it is curated and configured to specific audiences. Perspectives can concentrate details on diagnostic journeys, the minute-by-minute and hour-by-hour demands of care at home, the grinding and soul-destroying experiences with health care coverage, and so forth, just as Śliwiński demonstrates.
Śliwiński’s documentary is courageous and artistic to be sure. It’s worth watching on that basis alone, and as a basis to root for it on Oscar night. But, it’s also worth watching as a method to create and apply effective patient perspectives. These perspectives are of interest in many health care sectors now, but just a single, encompassing patient perspective will not be responsive or interesting across all the sectors for all potential purposes. Patients and patient groups will gain more from creating perspectives that are targeted at specific inquiries and opportunities.

Below is the trailer to the film that you can watch in its entirity at New York Times Op-Docs.

Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.