Doctors are not required today to provide all life-sustaining measures possible. Doctors are now being trained to implement new proposed federal guidelines for end-of-life care. In their medical training, doctors were taught to save life at all costs as they swore to uphold the Hippocratic oath they took when they became doctors. Now, however they must develop skills to revoke legal and ethical issues that guided them in the past.
Doctors are today challenged to deal with end of life proposed medical treatments issues that center on withholding and withdrawing medical interventions. Doctors, and their assistants are all being taught the skills necessary to negotiate with you, discuss with you, and implement decisions to withdraw life-sustaining treatments from you that are financially costly.
For centuries, all doctors implemented medical care and provided continuity of care in their practices. The doctor is now responsible to ensure that, despite lack of medical knowledge, his patient’s wishes are documented and supported by his medical orders. A patient’s advance directive must now be translated into treating his present medical conditions, as defined by our federal government.
Advance Medical Directives
These are legal documents made by you and allows your surrogate to be your decision maker when you become incapacitated. That person can accept, reject, or withdraw medical procedure and life support on your behalf. If you don’t have this directive, the court can appoint a guardian to make medical decisions for you.
A part of the directive is DNR, (do not resuscitate), passed in 1991 into federal law. It instructs removing any life saving resuscitation or procedures to restart your breathing or your heart. This is now an option offered by hospitals, and must be placed in your chart once signed.
The purpose of the DNR was to avoid suffering from a terminal illness or any condition that is medically irreversible. Once on the chart, the hospital personnel are forbidden to use CPR and other reviving measures on your behalf.
You can revoke the DNR document anytime you communicate your desire by removing your medallion or bracelet that indicates your DNR status. Some states will keep a registry of all people who have DNR orders.
These forms can be requested from a doctor, you can write down your wish, or some computer software for legal documents can prepare the form. The doctor must be told your wishes and he must explain to you what happens when you sign a DNR order. The doctor must sign the DNR order before providers can honor the order. A doctor who does not carry out your DNR order, for whatever reason, must be removed from your case.
THE QUINLAN CASE
In 1976, artificial nutrition was withdrawn from Quinlan assuming she was in a persistent vegetative state. Seven years later, a commission to study medical ethics found no medical reatment are obligatory, including artificial nutrition and hydration. In 1990, the Cruzan case, said artificial hydration and nutrition are the same as all other life-sustaining treatments. States differed in what requirements were necessary if a patient lacked decision-making capacity; some require clear and convincing evidence, while others allowed substitute decision-makers.
THE ROLE OF HOSPITALS
Hospitals have always developed institutional policies drafted by their ethics committees, to protect your rights and interests. Other risk management committees also protect the hospital from the legal challenges of withholding and withdrawing nutrition and hydration if you lack decision-making capacity.
The general response was,” when in doubt, choose the treatment that will prolong life”. To bypass this goal of life at all costs, written plans of care are now being specifically written to accomplish the new goals of end of life policies.
Emergency units are required to provide resuscitation and life-prolonging treatments unless you have a DNR order in place. Since only doctors can write orders, the doctor is being bypassed by making it the responsibility of an entire healthcare team to ensure that your wishes are followed.
Most patients enter intensive care units without attention to issues of life-sustaining treatments. Most of them were given invasive medical treatments against their wishes, and many of them survived.
These new guidelines require that if you are transferred to an acute care setting, your medical care orders must be completed and an appropriate end of life treatment plans must be in effect. Seventy five percent of patients transferred from nursing homes to a hospital acute care unit, do not have advanced directive orders. This will change soon. Currently medical care orders may not transfer across settings from nursing home, ambulance, or acute care hospital. Changing this will eliminate a great deal of expensive care on your behalf.
WHAT LIFE-SAVING TREATMENTS ARE WE CONSIDERING?
They include: cardiopulmonary resuscitation, elective intubation and mechanical ventilation, surgery, dialysis, blood transfusions or administration of blood products, artificial nutrition and hydration, diagnostic tests, antibiotics, other medications and treatments, and future hospital or intensive care unit admissions. A DNR directive would eliminate all of these treatments.
YOUR DOCTOR, NOW A SALESMAN
Your doctor or his surrogate will now discuss specific treatments with you and your families and tell you whether these treatments will achieve the overall goals. Your family will be asked whether you prefer a invasive intervention or an alternative noninvasive intervention. The doctor will get an idea of your priorities as you make treatment decisions. How you answer about antibiotic decisions and surgery decisions will indicate to him how successful he will be in selling you a “noninvasive decisions”.
SOCIETY VIEWS ON PROLONGING LIFE
Very few nonwhite patients have DNR orders. Asian cultures, oblige children to take care of their parents in gratitude for the parents taking care of them. Withholding life-support is seen as unfaithfulness. Even if you do not want life support, the family is expected to do everything possible to prolong your life and keep honor in the family.
Different cultures see suffering in different ways. Obama care sees the withholding of life measures at the end-of-life as a very compassionate act that prevents you from needless suffering. Many others, however, see pain and suffering as redemptive, to be endured as a test of faith rather than to be avoided. Many religions feel that only God knows when it’s time to die. This affects how they feel about life sustaining therapies.
Most religions teach that when death is inevitable and not caused by the absence of hydration or nutrition, withholding these treatments would be appropriate. Most religions however teaches that , as found in the Hippocratic oath, human beings must do all in their power to prolong life.
TO FEED YOU OR NOT TO FEED YOU
Most family members are troubled if they’re sick member is not eating. It has always been considered ordinary care to provide oral nutrition if you want to eat. This included bringing food to your mouth even if you are too weak to do so. You are given assistance, and special attention was given to the consistency and smell of the food to make it appetizing.
Your doctor will now tell you that this is an emotional and spiritual issue, not a biological medical care issue. When a family member is given a feeding tube, you will be told it only sets you up for a later disappointment.
The current guidelines propose that decreasing your caloric intake, increasing your metabolic rate, and helping you get vitamin and nutritional deficiencies are all good treatments. These new findings contradict popular wisdom by doctors that provision of nutrients improves quality of life and survival. The new approach is to tell you withholding treatment is guided by “current medical evidence”. Today it is considered unethical and even illegal to force you to eat if you do not wish to do so. If you taken no calories, you soon develop ketosis, as fats and proteins are metabolized to give you an energy source.
If you cannot eat, and you appear hungry, nutrition by intervenous methods were used. This maintained your electrolyte and fluid balance while you are temporarily unable to drink adequately.
The new guidelines want to administer fluids subcutaneously. They will tell you it eliminates the need for skills to locate a vain, and avoids the risk of infection, clot, bleeding, when IDs are given. Incidentally, no medical technician needs to administer this procedure. A large needle is put in the belly or thigh and 3 quarts of fluid are given every day. Each quart contains something different. One has more salt, one has less salt, and a third As equal amounts of salt and water.
Medicines will be stopped, drying agents will be given, but you will be given good lip and mouth care to leave your thirst. You will be told dehydration improves endorphin release and you will have an improved mood.
You are given enteral nutrition to improve your strength and avoid starving to death. Many people feel that you are weak because you are not eating. They also feel if you do not eat you will die.
If the cancer can’t be reversed, you are told the causes of the anorexia cannot be reversed. Gastrostomy feedings are no longer popular, increase the risk for aspiration rather than reduce it. You are told feeding tubes result in increased mortality. You are told these tubes are associated with infection, swelling, obstruction, and desperation pneumonia. In summary, the new guidelines show that there is no evidence enteral the nutrition will improve the quality of life for survival of your sick family member.
By providing training in discussing the end-of-life issues, the reimbursement dollars of ineffective treatment, and insufficient attention to alternative withholdings strategies to meet family needs shows they care for you the patient.
Doctors are not required today to provide all life-sustaining measures possible. They must only accomplish treatment goals within the bounds of accepted medical practice. A doctor does not have to write a futile order, like IV nutrition. Even when a treatment might prolong life by giving antibiotics or IDs, the patient has a right to refuse and the doctor has an obligation not to provide this service.
Is withdrawing or withholding hydration and nutrition euthanasia? It is a decision and action that allows cancer to progress on its natural course. The action is not to seek death and end-of-life? Contrasting, euthanasia actively seeks to end a patient’s life.
The doctor must use the means necessary to accomplish the intent. Opioids for pain, sedatives for sleep, and other treatments controlling symptoms with dosing guidelines used. Death is not the treatment. By relieving the symptoms, it does not intentionally caused death.
Today’s guidelines state that there is no evidence artificial nutrition alone improves functional ability or energy, relieves fatigue, or improves survival, it is a cancer responsible for your anorexia and weight loss.
We know that large doses of opioids to relieve pain, also result in respiratory arrest. These large doses are permitted inappropriate, if the intent and doses given are titrated to the patient’s needs. (who defines needs?).
Communicating the bad news when considering withholding life-sustaining therapy
That doctors must follow a six step protocol, called spikes. If a treatment has no chance of achieving an intended benefit, like CPR on a body with a head severed, it need not be offered. Doctors are told patients want to discuss treatment decisions even if benefits are zero. It builds trust and doctors must develop skills when they discussed withholding treatment.
The first discussion is about general goals of care. The doctor is to discuss specific treatment preferences in light of whether they will help achieve the overall goal (who defines the goal). An end-of-life nurse specialist, a part of the healthcare team, will continue the discussion and prevent some conflicts within the team. They will spend additional time talking to the patient and family. The team will give emotional support to both family and patients.
Despite all this discussion, but doctors still must write the medical order, and assume full responsibility for its accuracy.
Doctors find it hard to discuss withholding artificial feeding and hydration. They have not been trained to do so. Food and water were symbols of caring. Withholding hydration was seen as neglect by the family the patient, and all caregivers.
The doctor must get familiar with the new policies and statutes their hospital has established. Many doctors presume their hospital has a specific policy on hydration, reflecting state and federal laws. Doctors must now be reminded that no state requires artificial nutrition and hydration when a cancer patient cannot eat. Most states leave those decisions to the doctor and his patient.
A doctor must ask the patient and family what they understand. He must make sense to them about eating, drinking, and disease patterns. If a family member says mom would get better if she ate, the doctor must review why mom is weak. He must explain how normal dying occurs when family went to hydrate their loved one.
The selling continues by doctors saying
“Can we review our overall goals for your care?
Let me tell you what I understand you want as we plan your care.”
The doctor must talk about the general medical condition and if the patient has advanced cancer, let him understand the overall situation. He will be told the expected course of the cancer, and told everything meaningful is not reversible. Finally specific life sustaining treatment preferences are discussed.
A well-meaning doctor might say do you want us to do everything? This misleading question must be avoided. Everything is too broad, and misinterpreted, especially when the family believes everything has not in fact been done.
The family must see that improved energy and strength will not occur with artificial fluids, and above all will not accomplish medical goals. The family must understand the goals for artificial nutrition are appropriate.
Specific treatment preferences must be discussed in a language the family will understand. Perhaps a translator is necessary who is trained in the skills. Information must be given a small aces daily. The decisions made must be reinforced. The team must check for reactions, ask for questions, and clarify misunderstandings. In other words, diplomacy is the rule of the day.
It is quite confusing to ask families to decide about specific treatment preferences. Doctors must not state that all possible therapies will be offered from which the family can choose as items from a menu in a restaurant.
Contemporary medical care requires informed consent, a fundamental ethical principle. Patients deserve a clear, complete understanding of all therapies proposed for them. Some want to know all the details, and others prefer to do nothing.
The doctor must be prepared to simplify the aspects of hydration that conforms to the principle of informed consent including: the problem of treatment addresses, what’s involved in the treatment, what happens if the patient decides not to have the treatment, the benefits of the treatment, and the burdens created by the treatment. The patient is given a patient’ family education handout during these sessions.
What if the family of the patient says: I don’t want mom to starve to death, dehydration is a miserable way to die, we can’t just let her die. These are goals for the family and not goals for the patient. The family may believe their lack of appetite and oral intake of fluids are causing the patient’s level of disability.
The program doctor answer is: that cancer is taking all your strength, your heart is so weak and this is what causes you to lose your appetite and fuel so petite. I understand why you think that, but mom is dying of cancer, not starvation.
The family must know that a dry mouth and not improved with interveners fluids, But more likely with oral lubricants.
Your doctor must respond to the motions. He will be programmed to say” I wish things were different”, acknowledged the situation, and then become silent. He then turns the emotional support to other members of the healthcare team. Since emotions are challenging, other trained members of the healthcare team will assist.
A well articulated and understood plan will be established. It may be simply, will discuss this again at my next visit, or convene a family meeting to discuss the proposed treatment plan. Discussion would include social work, a chaplain intervention, notifying a key family member from out of town, and organizing nursing.
If the doctor is forced to give a time limited trial of artificial nutrition and hydration, the doctor must set a measure of success: we will see if mom feels stronger or can resume eating after two weeks. Tolerating the feeding is not a good endpoint.
The plan must be documented and spread around, so the entire team can work in a organized fashion. The doctor, after writing the appropriate orders, must document the discussion in the medical records, and talk about the plan to the health care end-of-life team.
Families change their goals and treatment priorities periodically. After being presented with a situation and information, the family must know that the plan can change at any time.
Most patients feel very lonely as they fight for their lives in an intensive care unit. They are curled up in a blanket, the hospital blinds are never opened, as they see themselves at the edge of the world.
Many are lonely, cut off from their family, friends, and the real world outside of the hospital.
A hospital filled with doctors, nurses, and healthcare professionals, do not help relieve the loneliness of dying. Many of their friends do not visit because they can’t see their friends suffering. They are not alone, but they feel alone.
Their loneliness contributes to their weakened immune system and a desire to fight for life. We humans have evolved to depend on each other. If we do not connect with others we are more likely to die without passing on our genes. Our desire to fight loneliness is as strong as our need to eat drinks, and relieve pain. We all seek companionship and fear being ostracized.
We all seek support in whatever way possible. A hospital is cold when one is alone. Now with the hospital no longer providing medical help, it makes more sense to die at home.
We are all going to die, but our culture dreads death. Few Americans today die at home with their family around them. We all seek the latest new treatment. After all, it is something new to try and maybe it will help, just maybe! Now the guidelines tell us there is no hope.
Most of us should consider shifting our primary attention to compassion and palliation of pain, rather than a long shot high-risk investigational intervention.