Why do doctors have such a hard time embracing hospice care and using it to benefit patients, particularly oncology patients? Referring a patient to a hospice program starts a sophisticated plan of care wholly directed at patient comfort, education of the family and grief counseling for the family.
Why do doctors have such a hard time embracing hospice care and using it to benefit patients, particularly oncology patients? The Dartmouth Atlas Project recently reported that the percentage of cancer patients who are referred to a hospice program in the last 3 days of life rose by 31% from 2003 to 2007. The total share of cancer patients even receiving hospice care was only about 61%.
David Goodman, co-principal investigator for Dartmouth Atlas said more patients are being admitted to hospice in the last 3 days of life “when it’s too late to provide much comfort” and that “many patients are receiving more aggressive in-patient care and less effective hospice care.”
In addition to my oncology practice, I have been a hospice medical director for over 25 years. It is a large nonprofit, and through my involvement in hospice and palliative care I have had the opportunity to interact with patients, families, and physicians from across the country. There are many wonderful oncologists who take pride in caring for their patients until the very end. But I am concerned here with the doctors who do not utilize hospice care appropriately and once they do refer the patient, they no longer want to be involved with the care.
For example, the Dartmouth Atlas study noted the inappropriate use of feeding tubes in dying patients. We are all aware, or should be, that feeding tubes do not make dying cancer patients live longer, heal wounds, gain weight, or decrease aspiration. They more likely cause aspiration, diarrhea, and nausea. But families and doctors continue to force PEG tubes on patients without asking them their wishes and without full disclosure of the risks and lack of benefits.
When I am asked to describe the dying process for most patients, I tell them that they will eat less and become more tired over time. They will eat less and sleep more until they start sleeping all of the time and their body will shut down. It is a natural process to stop taking in nutrients that can no longer provide the benefits they did in a recuperative state. I encourage them to eat what and when they choose, and I strongly urge families to resist making the patient feel it is their duty to keep eating. Offer food without pressure and never make the patient feel guilty for not eating. It can be difficult for families to watch as a loved one stops eating, and in our society they often expect the patient to pass away very quickly when they no longer eat or drink. The longest I have seen is a woman who went 6 weeks with nothing but mouth care. Patients can be kept perfectly comfortable, but I sympathize with families-it is an extremely difficult vigil. I liken it to a bear in hibernation. They expend very little energy so have little intake requirements.
The larger issue is chemotherapy and radiation at the end of life. The single best measure of appropriateness for chemotherapy and expected response is performance status. If your patient with a stage IV solid tumor cannot come into the office unaided and spends most of the time in bed or seated because they are unable to perform activities, they have little chance of prolonged survival from further treatment. Often, those patients are barely functional, but no one sits down with them and has an honest discussion, or the family keeps insisting that “Dad is a fighter! Aren’t you, Dad?” With the schedule most doctors keep in the average work day, they pretty much just wash their hands of it and say, “OK-go on back to the treatment room, and we’ll try something else.”
But that is the coward’s way out and it does not have to be like that. First of all, any patient with incurable disease should have a goals-of-care discussion. A frank, honest talk about what we can and cannot do for their disease to make them live longer, but also what we can do to let them live as long and as well as possible. Patients who enroll in hospice in a timely manner live better and longer because they get less toxicity from ineffective therapies. They save money, too.
Referring a patient to a hospice program starts a sophisticated plan of care wholly directed at patient comfort, education of the family, and grief counseling for the family. Many larger programs offer adjunct services like pet support, massage therapy, music and art therapy, and incredible support from dedicated volunteers. It is a safety net for everyone. The patient gets care in their home, the doctor has a nurse watching the patient and giving them information to help them manage the patient for maximal comfort. Unfortunately, I have been told by a number of oncologists that they don’t like managing their patients because “it is too many phone calls, and I don’t get paid for any of it.” How do you think the patient and family would feel if they heard that?
The Medicare hospice benefit is the most overregulated program on the face of the earth-trust me-I get it, and I find the regulations to be burdensome, add in the State Board of Pharmacy, Joint Commission, and the State Medical Board and it can feel onerous. But really, if you went into oncology you pretty much signed up for this part. I consider it an honor to be asked to care for a patient during end of life.