Patients’ Rights: When Is It Okay to Say No To More Treatment?

Russ Krengel Patients

Many Americans have encountered tough decisions about end-of-life healthcare treatment and what that might mean for a patient’s quality of life. For Ezekiel J. Emanual, an oncologist and Vice Provost of the University of Pennsylvania, that tough decision came after his aging father suffered a fall. Dr. Emanual’s father was diagnosed with a large brain tumor while in the hospital, among other ailments, and physicians on site were immediately available to assess his state and begin forming a robust treatment plan, before Ezekiel could fly across the country to be by his father’s side. Knowing the risks of brain surgery and the debilitating effect it would surely have on his father’s ability to communicate with family or to advocate for himself, he asked his father – also a doctor, a pediatrician – how he would prefer to go forward. The answer was a definitive no to additional treatments, he wanted to go home and live out the time he had left without having to deal with surgery, recovery or debilitating side effects. For him, like with many patients in America, that is often easier said than done.

All of this happened on a weekend, and the hospital staff was able to summon the services of multiple physicians, surgeons and others for immediate care. But when Dr. Emanual requested an end of life care consultation for his dad, he was met with delay. Those providers were not available until their offices were open on a week day. And the pressure from hospital staff, while well-meaning and capable, was not what the patient or his family were seeking in that difficult time.

Some might read this and think greed is the driving force, and that may be partly true on a grander, more corporate scale. But the more likely culprit, the key to making a shift from painful, expensive and somewhat unnecessary medical treatments when a terminal diagnosis is evident, comes from knowing your rights as a patient and having the capacity to follow your own wishes, with good in-home services, palliative care and eventually hospice.

In a recent article about his father’s experience, Dr. Emanual cites process and norms as the culprit saying, “For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions – MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest – but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling and home care to patients and their family.” That last line is key – “…and their family”.

A difficult diagnosis can be hard on a family, which in turn, compounds the difficulty of the situation for a patient as well. And cost deserves a mention, though it is not what any of us want to base our healthcare decisions around. The reality is that there is significant cost associated with most healthcare in America. For example, Dr. Emanual’s father was in that hospital for 12 hours and the cost was almost $20,000. Conversely, his home healthcare, managed by professionals and allowing him to be at home, spending his final weeks surrounded by family and with a significantly better quality of life was barely $6,000 total. Again, it is not the money that matters so much, but that is not an insignificant difference and should not be ignored.

Overall, the most important thing to take away from Dr. Emanual’s experience was the importance of acknowledging his father’s wishes. There was dignity, love, kindness and respect involved. We can all celebrate when new medical advancements can cure a disease or save lives, obviously. That does not mean that we will not all, one day, pass away. And when that time comes, most of us would prefer a calm, nurturing, peaceful end without tubes, or needles or beeping machines. Know your rights as a patient. Have conversations early with parents and other elders, before there is the chance that they cannot communicate their wishes effectively. Dr. Emanual stresses that you do no not need to be a medical professional like he is to step in and advocate for a better way to die, whether for yourself or for a loved one. Quality of life matters, especially in our final days.