Crossing the Bridge: Frank Conversation on End of Life Care
- By: Molly Smith, Vice President, Policy and Innovation
- On: 02/10/2015 16:52:48
- In: Policy
- Comments: 1
When you ask people what hospice is, many will tell you that it's where you go when the doctor says, "There is nothing more we can do for you."
I don't think John and Audrey would agree.
I rode along with Gina, a hospice nurse with HCI Hospice Care Services, as she navigated the icy roads of January in southern Iowa to get to Audrey and John*. John was relieved to see Gina. In his late 70s and leathered by decades on the family farm, John was mostly deaf. He immediately handed Gina three new prescription bottles, along with a shoe box that held nine others and a bunch of scraps of paper with various instructions. "How can one person take so many medications?" John asked. "Am I doing it right?"
It took Gina about 20 minutes to reconcile the medications and lay out a seven-day supply. John's eyes didn't leave Gina's hands. "Who do you call if you aren't sure?" she asked. "You," he answered. "That's right," Gina said. "Day or night. 24/7."
We then went to check on Audrey, John's wife. Audrey was awake and alert, but John said she hadn't spoken in two days. Gina took Audrey's hand and gently spoke to her. How was she feeling? Did anything hurt? How had her eating been? Gina took Audrey's vitals and noted her excellent color. When Gina was done, the two women just sat together. When it was time to go, Audrey lifted Gina's hand to her lips and kissed it.
Hospice isn't about giving up hope; it's about redefining hope.
Audrey probably did not expect to recover from her terminal illness (dementia). However, she could expect to be able to live in her own home, have help managing her conditions, obtain emotional and spiritual support, identify goals for her remaining time and be assisted in completing those goals. John could expect help in caring for Audrey and support in managing his own emotions of feeling stressed and overwhelmed.
So why is it that we associate hospice with the idea that there is nothing left that can be done?
I'll state the obvious here: because it's hard. Talking about hospice means facing death - our own or that of someone we love. That's not easy for anyone: not for patients, not for their families, and not for their physicians. There is a fear that hospice is giving up, and giving up is not something we do or plan for. We plan for a cure, and giving up is the "bridge we will cross when we get there."
Why does it matter if we wait to cross that bridge?
Hospice can make the final arc of our lives more comfortable, more meaningful, and, yes, more alive. Take Audrey. She was in the comfort of her own home with her husband, their daughter and her cat. She had her bed, the familiar view out of her window and her food. She wasn't attached to a ventilator or any other tubes or machinery. She wasn't in pain. While she hadn't spoken using words for several days, she could communicate in other ways. She could kiss Gina's hand.
When to cross the bridge is never an easy decision, but our resistance to addressing the issue may mean missing important care. By the time it's "obvious," it is likely well past the ideal time for hospice. To experience the full benefits, patients would ideally be receiving hospice services for months. However, half of all patients who enter hospice receive the benefit for less than three weeks. More than a third are in hospice for less than one week (National Hospice and Palliative Care Organization). Unfortunately, there is little spiritual or emotional support that can be meaningfully delivered to patients and their families in such a short time.
We need a better model of care for individuals who may be in the last one to three years of their life. We need a way to care for people more holistically while they are receiving curative treatments and to transition them to hospice earlier, when they can benefit most. While much work remains to be done on the details, I suggest three places to start.
First, we need earlier conversations among patients, their families, and the medical team about the course of a disease and options for care. The primary onus for starting these conversations should be on the medical team. Dealing with a life-limiting illness is scary and disorienting, and not all patients know their options. Medical teams need to be prepared to discuss hospice, explain what it is and advise on the right time to make the transition. To do this, clinicians need more training in initiating and continuing conversations with patients about the goals for their lives, their understanding of their disease and treatment options, and recommended courses of action.
Finally, we need to blur the bright line between curative treatment and hospice that exists today. Ideally, patients would receive hospice-like services, such as emotional and spiritual support, and assistance managing pain, throughout the curative process. Patients and medical teams would work together to understand where the illness is in its progression and what the patient's goals are for his or her life. This type of care already exists but it is not widely adopted. It's called palliative care. Barriers to broader adoption of palliative care include provider payment, awareness and access. Medicare, which pays for the healthcare services of most people near the end of their lives, pays for hospice but does not pay explicitly for palliative care. In order to be eligible for hospice services under Medicare, patients must stop receiving curative treatment. Therefore, for most people, the line is very stark. Payment for palliative care under Medicare would enable patients and families to transition from curative treatment to hospice more seamlessly. Physician education of palliative care would also help facilitate its use.
The always eloquent and thoughtful Dr. Atul Gawande writes about these issues in detail in his latest book, Being Mortal. This book provides an introduction to different options for care during advanced illness. He provides compelling data that shows how hospice and palliative care can improve the quality and length of life for individuals who receive it. I suggest this book for a deeper understanding of these issues. Tonight, Dr. Gawande will discuss his findings and perspectives in a Frontline special Feb. 10. I hope this is just one piece of a vigorous national dialogue on how we as individuals, families, societies and the medical profession want to live and be cared for during the course of advanced illness.