Nancy Berlinger, Ph.D., is a research scholar at The Hastings Center and co-author of a retrospective article on palliative and end-of-life care that was published in the Feb. 12 New England Journal of Medicine.
In part one of our conversation, Berlinger focused on the need to broaden the discussion among and improve training of clinicians on talking to patients about end of life issues. In part two, she discusses foreseeable scenarios, societal perspectives and how to improve media coverage of this complex topic.
Q: How do you advise providers to address the emotional side of end-of-life and palliative care with patients and families? No matter what the protocols are, it must be incredibly challenging for any clinician to discuss this.
NB: One thing I’ve learned after studying this area for many years is that it is foreseeable. These are not situations where clinical training would say “this will never happen to you.” There are some specialties where there are fewer emergencies than others or with a lower mortality rate than others. But if you chose to go into clinical oncology, or cardiology, especially working with acutely ill patients, if you chose to go into geriatric medicine, these are foreseeable circumstances. Just as the clinical course is foreseeable, the psychological and social course is foreseeable.
A colleague of mine calls them “problems of humanity.” This is about being human… because we’re mortal and it’s very difficult to face our mortality. This is when we come up against it. As a clinical professional you have to ride out to meet the person who’s going through this and try not to become numb to this because you see this frequently or become burned out and think “I can’t do this any more.”
Q: How can clinicians encourage families to have these important discussions before a health crisis hits?
NB: I read something recently which made a good point: it said advance-care planning isn’t about taking out your crystal ball and making all of your decisions ahead of time and writing them down; it’s about preparing yourself for the fact that you will be making decisions in the future. You’re thinking about preferences now, but you know you can’t anticipate every circumstance until you have a diagnosis. That’s why we also have mechanisms like POLST (check this tip sheet for more about Physician Orders for Life Sustaining Treatment). You can foresee the medical emergency you might have.
These are still not easy things to talk about. Not every family can have this conversation at the dinner table. In some cultures it would be impossible. People get to this point from different roads. The point is, we can have all of these initiatives targeted to different professions, and different care settings, and different members of the public, but there has to be societal will to improve the situation of the dying. There has to be societal attention to those 2.5 million people who will die this year, and their families and the millions who will die next year and the year after, who right now are facing decisions about life-sustaining treatment and are talking about this. It’s a very large percentage of our population.
Q: Can we address this challenge as a nation or should these issues be addressed at the state level, such as Oregon’s Death with Dignity Act?
NB: We have to address it as a nation, because programs like Medicare are national programs. The ACA is a national health reform initiative. Hospitals, nursing homes, hospices, are in some ways regulated at the federal level and in others at the state level on their funding streams. It’s always going to involve national will and priority setting in addition to what’s being done at the state level. But all care is local. Some journalists have done a phenomenal job demonstrating just how difficult it is to piece together the care you want, the care you need, unless you’re very wealthy. So these raise other problems of justice and fairness in addition to quality issues.
Q: How can journalists help their audiences better understand these very complex issues and interactions?
NB: It’s important for journalists who are covering stories at the local level to know how this hooks up to national issues and to historical issues. They should be saying “here’s what’s been going on over a long period of time; here’s the history of how our society deals with mortality on the one hand and technology on the other hand.”
Keep going at it from different angles and don’t stop trying – because we need to talk about our mortality. Because people die every day. People are facing death, they’re approaching decisions that advances in technology are putting in front of them every day. Ask the hard questions, like “is our society is organized for all people, from birth to death? Are we, as a society, “for” the person who’s nearing the end of life? Do we try to see the world through their perspective? How can society support you and limit the potential for harm?”
Any journalist covering health should have a basic understanding of financing – how Medicare works and where Medicaid comes in as the big funder of long-term care. Understand what people die of in a technologically advanced society with a good public health system. The three main trajectories are cancer, major organ disease and Alzheimer’s disease. How do those differ from one another and how are they similar? What is good palliative care for someone with COPD or a stroke? It’s not the same as someone who has cancer.
Q: Any other tips to help journalists improve depth and scope of coverage?
NB: Get familiar with important medical literature over the past five years. Be up to date on how palliative care is used in these different fields. It’s also important to examine clichés. Work with your editors to examine clichéd thinking about end-of-life care. Take a look at some of the myths and clichés when writing about end-of-life care – like we discussed earlier, who provides end-of-life care? It’s not only hospice clinicians. You’re missing out on the broader range of stories if you only talk with hospice providers. Ask how end-of-life care works in your own community. How does it compare to nearby communities? There are resources available like the Dartmouth Atlas where you can find out how many people have completed advance directives, for example. Educate yourself so you can educate your readers.