Effective communication for planning living will

Glòria Galvez

Planning living will is a key element for the care and attention of people with advanced chronic diseases and their families. In recent years, models and proposals have been developed throughout the Spanish territory, such as in Andalusia or Catalonia, based on respect for the person and framed in quality care, taking into account their wishes, expectations and preferences.

The communication within planning living will has been shown to have important benefits when a terminal process of the patient is expected, since a shared decision-making process is established in a trusting environment, at the same time as it’s incorporated in to the family and relatives care planning. Addressing these issues effectively involves doing so at the moment when the patient still retains his decision-making capacity, that is, at the earliest time of his hospitalization. Doing it later may pose a greater risk of aggressive and unnecessary treatments.

Despite their high therapeutic value, professionals report great difficulties in maintaining a fluid communication with a terminally ill patient. In a recent Canadian study published in the journal JAMA some of the reasons for this difficulty are described as: uncertainty of the prognosis, fear of causing distress or perception of patients being unprepared to talk about it.

The Catalan Institute of Oncology (ICO), a world reference centre in the design and evaluation of public palliative care programs for the WHO, with Dr. Gómez Batiste at the helm, has designed a new model of palliative care at the Institute in which it is proposed that communication with the patient follow a strategy based upon open questions, considered key to detecting their basic needs: How do you feel? How do you perceive your current state of health? What are you worried about? What do you think may happen in the future? What do you think would help you fight this situation? What do you need us to do for you?

Dr. Gawande, in his book Being Mortal, also proposes some key questions that can help professionals have a quiet conversation about the end of life process. Faced with this open approach, there are those who propose a closed script with previously prepared themes. This can be quite a challenge due to the different barriers that have been expressed by professionals, such as the fear of eliminating all hope that the patient may have regarding his illness.

Both strategies have advantages and disadvantages: the open format allows the patient to express fears or questions that the professionals had not foreseen, and the closed format could facilitate professionals in asking potentially difficult questions. To illustrate the post, I leave the video in which Dr. Meier, a doctor at Mount Sinai Hospital and director of the Centre for the development of palliative care (CAPD) in the USA explains the 10 essential steps in communicating with patients and family members receiving palliative care:

1. Review the patient's clinical situation.
2. Prepare a decent, comfortable space with privacy and confidentiality.
3. Present the attendees and comment with simplicity on the objectives of the meeting.
4. Find out what the patient knows about his illness.
5. Explore what the patient wants to know: ask/explain/ask. Ask about the required information.
6. Explain the thorniest details required by the patient.
7. Ask if they have understood the terms used and encourage them to repeat them in their own words.
8. When faced with difficult questions such as: Am I going to die? Simple and clear answers: Yes, you will die and we will be permanently by your side, watching over your welfare to the maximum.
9. Analyze the therapeutic options, without deceiving but without denying reasonable hopes.
10. Organize and plan the next visit.

Communicating is also being able to know how to listen; it’s a key aspect in knowing what the patient's situation is at each given moment. For active listening to work, it’s better to move away from paternalism and facilitate the patient's participation in the decisions that best preserve their dignity and freedom.

Against medical overuse, more primary care

Atul Gawande, a surgeon and author of the book "The Checklist Manifesto" and "Being Mortal" among others, has published an article in The New Yorker, "Overkill," which talks about the disproportionate clinical practices, especially those in their country, the USA. It’s a long and well-documented writing that I’d like to comment on in this post for two aspects I consider important because they can help fight the epidemic of overdiagnosis and medical overuse. The first question posed by Dr. Gawande is an organizational consideration of diversion of resources, and the second is a proposal to avoid mistakes when prioritizing budgets.

Preventive activity and daily clinical work

The case-mix seen in clinics today has changed dramatically with the impact of secondary prevention programs and the medication of risk factors. Now the doctors’ agendas and especially those of family physicians are filled with healthy people who are afraid of getting sick, a situation that not only uses up medical time but also diagnostic tests, medications and referrals to specialists (if you are interested in this issue don’t miss the book "The patient paradox" written by the Scottish family physician Margaret McCartney). Cost considerations aside, health resources are so busy in offering care for healthy people and invest so little effort in addressing the clinical complexity of some patients that what they need really is multidisciplinary work and integration of services.

Big Med or wholesale medicine

A few months ago, Josep Maria Monguet published a post on this blog about the low cost medicine in India, and along these lines I thought it would be interesting to comment on an article by Atul Gawande in the New Yorker with some comparative reflections between medicine and restaurant chains. "In medicine -says Gawande- try to provide a wide range of services to millions of people at reasonable costs and an acceptable level of quality, but the reality is different: the costs continue to rise, the service we offer is mediocre and the quality, uneven. Each doctor has his own way of doing things and the variations in the results, even within the same health centre, are inexplicable.

Dave Luz, regional manager at the Cheesecake Factory in the Boston area, explains to Gawande that his mother, with advanced Alzheimer's, fell down at home the other day and has been taken to the emergency room, where doctors visited her, did various tests and kept her under observation for the night. Luz received three types of explanations: from the emergency physicians, from the internist at the observation room and from a specialist, and these were not exactly coincident. He soon realized that there was no plan involved there. The next morning, a nurse told him that his mother was fine and that they would prepare her for discharge but because the nurse in charge was having her breakfast, they would have to wait, and that process, seemingly bureaucratic lasted until the afternoon because the doctor who had to make the discharge report could not be found. To cap it all, when it was time to dress his mother, the auxiliary disappeared and Luz had to fend for himself. With the discharge papers, he would schedule a control visit to collect the results of urine tests and one to see a neurologist. A couple of weeks later, the neurologist, after an examination that lasted a couple of minutes, called for new tests (by the way some matched those that had been made in the emergency services) and prescribed some medication that, once asked what they are for he admitted they‘re useless. Dave Luz says that this kind of disorganization among professionals and circuits, this lack of an overall plan, was to be found everywhere where he had to go to accompany his mother for receiving medical care.

"Being Mortal" by Atul Gawande: The End Matters

Dr. Atul Gawande is a surgeon, researcher and dilettante but also a writer as he describes himself in his twitter account. Dr. Gawande is also known in the field of clinical safety for his previous book "The Checklist Manifesto". The author of "Being Mortal" masterfully explains that life can also be valuable as we get older, frail and defenceless and that there comes a time when we can no longer fend for ourselves. The end matters, as sports enthusiasts know it so well, when pushing your luck at the last minute can lose the whole game strategy.

In his book, Dr. Gawande reflects on the end of life stage of many people from his experience as a doctor, to the extent that one of the best documented cases is that of his own father. In the video that I have chosen for you, you will see how he and his mother talk about it.

Early Palliative Care: + Life Quality + Life Quantity

More evidence supporting early palliative care:Study Identifies Factors Linked to ED Visits by Cancer Patients http://t.co/jdHwJUIZ99 #hpm”

— Jordi Amblàs (@jordiamblas) 3 de enero de 2015

A meta-analysis (you can access it through the link provided by the tweet from Dr. Jordi Amblàs) of 30 studies in 5 different countries and with a participation of more than one million patients shows that patients who had received palliative care were accessing the emergency wards less in the last month of life, which is very positive, considering that many emergency practitioners confess they are not equipped to properly address this type of patients, and also a trip to an emergency service increases the risk that people in advanced stages of illness are subjected to disproportionate actuations. As for the transcendent matter of the moment of the introduction of palliative care, although there are indications that precocity is positive, this meta-analysis fails to reach conclusions due to the heterogeneity of the selected studies.

Surgical Checklist: a challenged guarantee

The efficacy of surgical checklist questioned in the Ontario study. The importance of a good implementation program. http://t.co/p85tRgnJKh

— Elvira bisbe (@EBisbe) abril 1, 2014

The tweet from Dr. Elvira Bisbe ​​warns us that New England has sprung a surprise: a study in Ontario, deployed in 101 hospitals and more than 200,000 cases revealed that the application of a surgical checklist doesn’t significantly reduce complications nor mortality.