It was my first bereavement group meeting. One after another, people recounted heart-wrenching tales full of tears, anger, regret and loneliness over the loss of their spouse. Their partners had died in hospitals, with medical personnel trying to work miracles right up to the bitter end. They did not feel good about their spouses’ medical care or their hospital experiences, and that seemed to make the grieving process even harder.
When it was my turn to share, I was reluctant to speak, feeling almost guilty that my experience had been so different. My husband, Bruce, had decided to stop treatment for his terminal cancer, choosing quality of life over quantity. At the end of his physical and spiritual journey, he was calm and peaceful, without fear or regrets.
It became obvious that there was more than one way to face terminal illness and our experience was not the norm. Bruce had taken control of his end-of-life journey with advance planning, an informed understanding of the process of dying, the help of family and friends and a supportive medical team. Without any one of these, including our family physician, Richard Abraham, M.D., of Canton, Connecticut, our experience would have been quite different.
People with terminal illnesses don’t die alone. As part of a team, physicians play a critical role in helping their patients make the right choices consistent with their goals. Here are five steps you can take to help your patients receive the end-of-life-care they want:
1. Help your patients set goals for their end-of-life care.
Listen to your patients about what matters most to them at the end of life.
For example, is quality of life more important than quantity, are they worried about overly aggressive care, do they want to die at home? Fear can be a barrier to having this conversation but providing information will reduce their anxiety. Explain treatments they may want to accept or decline, for example, the use of resuscitation, ventilators or feeding tubes. Recommend readings where they can learn more about the process of dying and what others have chosen to do. Eighty percent of people say that if seriously ill they would want to talk to their doctor about wishes for medical treatment toward the end of life but only 7% report having had this conversation, according to a 2012 survey of California residents by the California Health Care Foundation.
2. Encourage your patients to have a healthcare directive and to appoint a healthcare proxy.
Explain why it is necessary to formalize and communicate their wishes for end-of-life care. Advise them what can happen if these documents are not in place. Talk to them about the implications of not making their wishes clear and the fact that without specifying limits, the default level of care will likely apply, meaning they will receive “all possible care,” especially if family members disagree and there is no healthcare proxy. Impress upon them that failure to plan ahead will make it difficult to achieve their end-of-life goals. Make sure the patient’s directive and proxy are in their medical record. Between 65% and 75% of physicians whose patients had an advance directive were not aware it existed, according to a paper (PDF) on advance care planning published by the Agency for Healthcare Research and Quality.
3. Develop an effective physician-patient relationship.
Find out how your patients want to interact with you. For example, do they want to know 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 health? Understand how their family situation/dynamics may complicate or help their end-of-life journey. Assure them you can support their goals (or if you can’t perhaps recommend someone who is a better fit).
4. Guide your patients on their end-of-life journey.
Illness and death can be complex problems filled with many players, lots of moving parts, complicated new subject matter and decisions that must be made with incomplete data. Make sure your patients understand their prognosis. Explain palliative and hospice care options and the full range and value of services they provide. Be available to answer their questions and calm their fears. Our family physician explained terminology, put statistics in perspective, looked at clinical trials, interpreted medical studies, helped us understand conflicting biopsy opinions and helped us evaluate treatment options recommended by specialists.
5. Help your patients live their life fully to the end.
Guide your patient’s transition from “being sick” and hoping for a cure, to “dying” and hoping for the best possible quality of life in the time remaining. Assure them the right care will be provided at the right time.
Help them secure the time to achieve a sense of closure. When Bruce’s colleagues wanted to throw him a party 10 days before he died, Dr. Abraham arranged for IV hydration to make sure Bruce could enjoy the celebration.
Although these steps can be part of your regular patient encounters, their value may be enhanced by resources provided at the practice level, such as informational handouts, newsletters, recommended readings, resource lists, seminars and information sessions and co-branded conversation starter kits. For instance, the Conversation Project, in collaboration with the Institute for Healthcare Improvement, has a tool called Your Conversation Starter Kit that helps people talk about their end-of-life wishes.
If your practice is involved in patient education related to prevention or well care, consider sponsoring similar events for ways to improve end-of-life care.
Susan Ducharme Hoben is the author of Dying Well: Our Journey of Love and Loss. It is the story of her husband Bruce’s terminal cancer and his decision not to spend his final days strapped to a hospital bed, but to spend the time he had left doing things he loved, surrounded by his family and friends. She chronicles the nine months from his diagnosis through celebrations, sadness and, ultimately, a peaceful death free of fear and regret.