Physicians can play an important role in helping patients define what dying well means to them and, when the time comes, help them make choices that are best for themselves and their families.
Susan Ducharme Hoben
Susan Ducharme Hoben is the author of the memoir Dying Well: Our Journey of Love and Loss. Recalling how she lost her husband to cancer — and the health care process that navigated him through his terminal diagnosis — she details the means by which physicians can correct errors in patient fulfillment and financial burden at the end of their lives.
In death, as in life, there are choices we make that determine the quality of our existence. While we may not be able to control the cause of our death, there are decisions we make that determine whether or not we die well.
What does it mean to “die well”? It simply means dying the way we want to. Physicians can play an important role in helping patients define what dying well means to them and, when the time comes, help them make choices that are best for themselves and their families.
Here are 3 areas of focus to think about when helping a patient navigate end-of-life decisions:This is an essential starting point for taking control of one’s end-of-life journey, but for many, it is a daunting first step. If your patients are like most of us, death is a great unknown and very scary. Doctors can help their patients plan by asking what matters most to them at the end of life (e.g., is quality of life more important than quantity, are they worried about overly aggressive care, do they want to die at home).
Explaining the benefits and side effects of aggressive treatments such as resuscitation, ventilators, and feeding tubes will help patients decide which ones they may want to accept or decline. Spelling out the implications of the default level of care being “all possible care” will underscore the need to formalize and communicate their end-of-life wishes in legal documents. The critical last step of planning is to make sure your patient’s Healthcare Directive and Healthcare Proxy are in their medical record. Illness and death are complex challenges filled with many players and moving parts, complicated new subject matter, and decisions that must be made with incomplete data. Even when patients have defined and communicated what they want, the actual day-to-day process of dealing with terminal illness is fraught with fear and anxiety.
A doctor’s role in helping patients navigate this final journey requires as much style as it does substance. It’s important to establish early on how your patients want to interact with you (e.g., do they want all the details about their condition and treatment, do they want to have a say in every decision, do they want to know your best estimation of how long they have to live, are they comfortable with those close to them knowing everything about their condition).
By knowing your patient’s goals and wishes, and the role they want you to take in their care decisions, you are better equipped to help them understand their options and take appropriate action. When my husband, Bruce, was diagnosed with terminal cancer, our doctor’s availability to answer our questions and calm our fears was invaluable. He explained terminology, put statistics in perspective, looked at clinical trials, interpreted medical studies, helped us understand conflicting biopsy opinions, and facilitated our evaluation of treatment options recommended by specialists.
An honest and realistic discussion about their prognosis, as well the benefits and side effects of potential interventions, is critical to your patient’s ability to make informed decisions about aggressive treatments that may be of little or no benefit to them. These decisions could result in dramatically increasing the quality of their final days without sacrificing quantity.
As the patient’s time comes to switch from the “sick” role to the “dying” role, their families and doctors need to make the transition from hoping for a cure to hoping for the best possible quality of life in the time remaining. When Bruce’s colleagues wanted to throw him a party 10 days before he died, our doctor arranged IV hydration so he could enjoy the celebration, helping Bruce live fully to the end.A 2012 poll from the California Health Care Foundation reported that 80% of people said that if they were seriously ill, they would want to talk to their doctor about wishes for medical treatment toward the end of life. However, only 7% reported having had this conversation.
You may need to take the initiative in suggesting your patients schedule a visit to talk about end-of-life care and, if necessary, be prepared to lead the discussion. Informational handouts, newsletters, recommended readings, resource lists, and state-specific legal forms would greatly enhance the value of this conversation.
Twenty-five percent of all Medicare spending is for patients who are in their final year of life, with a majority of that money being spent in their last couple of months for care that is often of little apparent benefit. Even though a very small percentage of seniors (only 2%, according to one study) request it, the default standard of “all possible care” contributes to an estimated $810 billion in unnecessary, unbeneficial or wasteful care to Medicare beneficiaries. Informed patients, supported by knowledgeable and compassionate doctors, can change this trend.
And the benefits are far more than just financial. For patients such as my husband, they may be obvious. When he decided to stop treatment, friends and family gathered around to say goodbye and ease his passing. Bruce died free of fear and pain, without regret. He had time to achieve a sense of completion and peace. That same sense of completion and peace was a profound and lasting gift to those of us who were left behind — including, I suspect, his doctors.