Elaine Mansfield: My husband Vic was strong and fit when he was diagnosed with incurable lymphoma. He went through chemotherapy and a stem cell transplant with relative ease and regained his vitality. Eight months after the stem cell transplant, we went to the ER because of swelling and arrhythmia. I refused to leave the room and witnessed as he was put on life support—a rough process. He survived twelve cardiac arrests of mysterious cause that night. He suffered in following months, but still taught a last class and completed a third book. Was this the time to call hospice even though he was undergoing experimental treatments?
Dr. Jessica Zitter: Unfortunately, at this time patients are excluded from hospice care if they continue treatments, even if their life expectancy falls within short prognosis for enrollment. The main reason is that when hospice takes over a patient’s care, they become responsible for costs, and are not reimbursed for treatments focused on treating the underlying disease. As you can imagine, hospice agencies simply can’t afford to take that on. Another issue is that the philosophy of hospice and palliative care is purely that of protecting patients from the symptoms seen at the end of life, which cause the suffering to which you refer. When patients pursue aggressive treatments such as most types of chemotherapy, there is a disconnect between the goals of the patient and those of the healthcare providers. It’s difficult to treat patients when these goals aren’t aligned.
The most frustrating part of this is that patients and families are generally unaware of the benefits of hospice, which INCLUDE, to the surprise of most, prolongation of life. A large study in 2007 from the National Hospice and Palliative Care Association demonstrated an average extension of thirty days for patients who chose hospice compared with similar ones who continued disease-centered treatment. The subgroup of patients with cancer showed particularly impressive gains.
The following spring, Vic’s oncologist gave the choice of salvage chemotherapy or hospice. Was this the time to call hospice?
“The chemo is strong,” the oncologist said. “It will give you a few months or you won’t be able to withstand it and you’ll die quickly.” Vic chose chemotherapy. I didn’t believe his quality of life was worth the suffering, but he wanted to live well or die quickly. He went downhill immediately. I talked to our family internist, his oncologist, and the hospital cardiologist and pulmonologist. No one was encouraging, but our internist was honest. “He’ll be on a respirator in ICU for a few weeks, and then he’ll die heavily drugged.”
JZ: Your doctor did you both a big favor in being honest. Most people don’t get this crucial information, and surveys show that they want to know what the doctor is thinking. You were also lucky you were in contact with your internist, who probably had a deeper relationship with you than your oncologist, giving him more confidence to approach with you with bad news. Moreover, an internist usually has a more patient-centered approach than a subspecialist, who is trained to think only of the disease, and not necessarily quality of life.
I ended the heroics and said no to a respirator. Machines disappeared. Moving Vic an inch made him gasp and struggle, so hospice came into his oncology ward room. Friends and I stayed with him every moment for 2 ½ days. He died 45 minutes after our son arrived. He was conscious with a small amount of morphine to ease breathing.
In his last days, he whispered, “I feel like I’m going to sleep and will never wake up.” I held him to my heart and said, “I think that’s the only way to stop suffering.”
JZ: You should be proud that you advocated for him this way. At least he had peace and comfort for those few days, which most patients aren’t lucky enough to experience. This is a perfect example of how patients aren’t getting hospice care until far too late in the course of their illness, and they don’t benefit from the tremendous improvements in quality of life that it can provide, even possibly prolonging their lives.
What do we do when the patient chooses to continue a hopeless fight to live? My local Hospicare Palliative Care Services of Tompkins County recently began a PATH program to help people with chronic and advanced illness before they are eligible for hospice. PATH allows active curative treatments while providing counseling, care suggestions, and help with resources and decisions. I wish this program had been in place in 2008.
JZ: Services such as these are tremendously helpful. They help patients ask for and attain treatments to promote quality of life, such as a palliative care consultation, and they also equip families to understand the options and think ahead about what they will do as the disease continues to worsen.
I believe, as do many others, that palliative care should be provided at the onset of diagnosis of many diseases. The American Association of Clinical Oncology recommends that, although it is just starting to be implemented in some practices. I’ve also heard of some cardiology practices which are collaborating with palliative care as soon as a patient gets diagnosed with congestive heart failure. Things are moving slowly: We still have a long road ahead of us.
Dr. Jessica Nutik Zitter is a physician in Northern California where she attends on the ICU service as well as the Palliative Care consult service. She is interested in changing the way we treat dying patients. She is a co-founder of Vital Decisions which provides telephone-based counseling for patients with life-limiting illness and author of “A ‘Code Death’ for Dying Patients.” She was featured on CBS Sunday Morning in a discussion called Experiencing A Good Death about death and dying in medical practice in the United States.
Elaine Mansfield is the author of a forthcoming memoir, Leaning into Love: A Spiritual Journey through Grief (Larson Publications, October 2014). She is a hospice bereavement group leader and blogger. Her articles have appeared at caring.com, Shambhala Sun Space, Alzheimers.net, elephant journal, and gratefulness.org.