Simone's OncOpinons on managing cancer patients are forthright in presenting difficult and right choices for us who trust his wise judgment and extensive experience. Yet his advice in his column in the Oct 10 issue on “life's end” was delegated to the writings of others (10/10/10 issue).
Oncologists have to appreciate that end-of-life care today is a specialized field of “Palliative Medicine” with its own training and medical board certification. For oncologists to manage or work as gate-keepers for the terminal patients is akin to internist and general surgeon managing cancer (or being gate-keepers) about three to four decades ago.
Oncological care has much to offer in cancer cure and significantly improves the length of survival. When these goals are beyond reach, cancer care should be coordinated with Palliative Medicine specialists who practice in many hospitals. Palliative care specialists have a good feel for the life-expectancy of end-of-life patients, contradicting an-often repeated comment, “We have no idea when the patient will die.”
The over-riding goals at the end-of life are the patient's comfort and ability to function, both physically and mentally. The question of how long a terminal patient lives is superseded by answers to these two questions: “How would the patient like to live?” and “How would the patient like to die?”
Palliative Medicine specialists, who care for end-of-life patients, are under-utilized because patients and families do not desire to confront the overall picture. Yet, busy cancer specialists are unlikely to have the patience, temperament, or set-up to achieve a different set of benchmark end-points.
Conflict of interest poses another dilemma. High technology and intensive care is a poor substitute (if not an added burden) for emotional fulfillment at the patient's (and the family's) most critical period in life.
The patients are often admitted to the hospital for a variety of pressing reasons and cannot be discharged for a host of non-medical issues. Instead of providing a holistic care for patients and their families, specialized care-givers are often “zeroed in” and “bogged down” with investigating and managing multiple biochemical, radiological or clinical abnormalities (including providing intensive care).
These are some of the reasons why the cost of care per person in the US is twice that in countries of comparable economic status. The US spends 17% of its GDP on health care, which is between 30% and 50% more than other countries with whom we compete economically.
Studies of the current practice highlight the present system's pitfalls. These include poor comfort care (part of this discomfort is treatment-related); lack of adequate communication between health care providers, patients, and their families; treatment decisions that in hindsight are contrary to the wishes of the patient, family, and good medical practice.
These factors are also detrimental to overall care. This whole experience is traumatic to all involved, with long-lasting residual effects on the surviving relatives and care-givers that run the risk of “burn-out.”
As a society, we have tried to remedy this with legal documents such as “Living Will” and/or “Healthcare Proxy” and/or “Advanced Directives,” etc. While these are all good, they are a poor substitute for family dialogues, bonding, and a common-sense approach to a challenging problem that barely existed a generation ago.
It is imperative that patients, their families, and doctors have an ongoing dialogue on the issue of end-of-life care, including practical and philosophical issues, and come to some understanding of what should and should not be done, long before the situation is at hand.
Helping the patient and family come to terms with the overall perspective of their situation is an ongoing process that cannot be rushed nor ignored. Today's society is a dispersed distribution of first- and second-degree relatives. To bring all on-board, while leaving behind “old baggage,” needs perseverance.
Patients with widespread disease who fail the first line of therapy should be introduced to the hospital's palliative care team to develop a relationship between the patient, family, oncologist, and palliative care specialist. The ongoing four-way dialog will establish an intellectual (scientific and objective) and emotional grounding for the times when difficult decisions have to be made.
While the oncologist and other specialists are disease-focused, the palliative care team is patient-centered and focuses on the philosophical, religious, and social-cultural values of the family. The team pays special attention to the basic needs of the patient and family, while weeding out extraneous factors that are of little short-term and long-term consequence.
A palliative care team includes the physician, a nurse, social worker, psychologist, nutritionist, pastor, and patient navigator, with each (as needed) having a continuing relationship with the patient and their home-care nurses.
A quarter of all cancer patients deplete their savings during treatment of the disease. The direct cost of treating cancer is about $90 billion annually. Yet 25% of all treatment costs are incurred in the last month of life.
It is common knowledge that the vast majority of cancer patients have little quality of life in their final months. They are generally confined to bed, their main physical activity being limited to visits to the doctors' office or to the hospital for blood or x-ray tests or to be admitted.
As oncologists, we should have a hard time reconciling a high-technology hospital with a highly skilled staff providing high-cost care to a patient whom everybody accepts is not going to get well. A Palliative Medicine specialist can be an asset to permit oncologists to do what we do best—be enthusiastic about cancer management.
GILBERT A. LAWRENCE, MD, DMRT, FRCR
Reply from Joe Simone:
Thank you for your thoughtful and comprehensive note. You make excellent points about the wisdom of getting patients to a palliative care expert, which I basically agree with.
Although I have personally faced this issue many times, mostly it was before there were trained palliative care physicians; in those early days nearly all children with cancer died. However, I believe the key difficulties have changed little in my long career. The relationship of the oncologist and patient is often close and psychologically complex, particularly when anti-cancer treatment is failing or at least unimpressive. The complexities include the parent/patient's sense of abandonment that may raise guilt feelings in the physician.
The parent/patients' wishes, more often than we would like to admit, are to “try anything and everything,” even when the chance of success is zero. It takes a lot of time and foresight to prepare a patient for the transition and, I am sorry to admit, some of us are not up to the task for a variety of reasons. Also, our medical culture in this country is that everyone has a right NOT to die, so that all treatments, no matter how unlikely they are to succeed, are allowable and even imperative.
When I was at St. Jude and head of the hematology-oncology program 30 years ago, I tried to install a requirement that when there was no further effective cancer therapy available, the attending physician would write a note in the chart to that effect, including the fact that he/she had spoken to the parents about this action. This would eliminate the restricted visiting by extended family and friends, and treatment would be limited to symptom control and comfort care (there were no hospices for children).
My plan failed. My colleagues insisted on a personalized approach that ranged from what I called “10th-line therapy” at one end of the spectrum to my own approach, which was more difficult to bear in those days, and I believe to this day.
So the tension between the doctor's freedom (“personalized therapy” in the emotional sense rather than the DNA analysis sense), the patient/parents wishes, the culture that considers death an option, and the runaway costs of care in this country all clash in such a way that each of the involved parties feels justified and no one feels responsible for unnecessarily prolonged suffering and exorbitant costs.
In the current political environment, anyone who wishes to make changes is accused of wanting “death panels” or rationing of care, both unacceptable at face value to most Americans.
Obviously, I don't have an answer. Equally obvious, I believe things should change. Perhaps our best hope is for palliative care units to become so widespread and so good at what they do that the public will slowly begin to realize that it is a better way to go for incurable cancer patients. Changing the pattern of care of each physician is a fool's journey. But they will respond to an informed public.
And, response from Gilbert Lawrence:
We are on the same wavelength. Precisely for the reasons you have outlined, a Palliative Care physician will hold our hand and help transition, beyond the emotionalism on the part of the oncologist and the patient. The challenge for leaders in a field is to create the environment (carrot and sticks) to move the process forward.
That brings me to your statement “Changing the pattern of care of each physician is a fool's journey. But they will respond to an informed public.”
Audits and payment reform are good ways to change physician behavior. One carrot/stick that physicians respond to is to withhold payment for unnecessary tests and treatment. If we are serious about the topic of end-of-life care, health care audits of services in the last month of life for certain RVUs (and exceeding a dollar amount) to BOTH doctors and hospitals could be triggered before payment.
Among the important things to audit in the patient's admission chart is the Karnofsky or ECOG Performance score and a consultation from a Palliative Care Specialist.
Just some thoughts. Please keep up the good work. We need leaders like you! If we do not do it, others will do it for us, especially in the current environment of “Medical Home” and “Accountable Care Organizations” spreading across the country.