The Tao of Departing: How Hospice is Transforming Medical Care, Part 2

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Hospice philosophy is guided by the four pillars of medical ethics: autonomy, beneficence, non-maleficence, and justice (i.e. what is fair to everyone). Each patient should have the right, as much as possible, to be free to determine for his or her self what will be allowed in their medical care. When patients become unable to express their own wishes, a decision-maker of their choosing needs to be appointed to act on their behalf to set and seek to achieve the goals that the patient would want if the patient were able to make an informed decision themselves. It should be made clear that the decisions should not be based on the surrogate decision maker’s personal values, but on what the patient would want for themselves. Clarification of this concept is extremely useful when a family member is required to consent to termination of life-sustaining treatment such as a ventilator or feeding tube. If the family member realizes that they are simply the messenger in delivering the patient’s wishes, there is much less anxiety and guilt than if the family member feels that they are responsible personally for making a life and death decision regarding the patient. 

Beneficence means the team is committed to doing what is good, right, and helpful for the patient. This does not mean that aggressive curative treatments must always be pursued. Dying is as natural as being born. Likewise, prolonging the dying process can be as harmful as preventing labor is to the baby in a pregnant woman at term. When it is impossible to prolong someone’s living, it is wrong to prolong their dying as it can greatly increase the severity and duration of suffering.  Instead, utilizing the principle of “doing by not doing,” we refrain from aggressive intrusions that disrupt the natural course of the body shutting down at its appointed time. We simply maintain the comfort and dignity of the individual as they prepare for their final departure.

Non-malevolence means that although we do nothing to prevent the body from going through its natural process of shutting down, we do nothing to hasten death, either. Occasionally, patients or their families will “just want it to be over," and request something to “speed things up.” If the patient is in pain, having difficulty breathing, intractable vomiting, seizures, or lingering for days in a coma it would seem like the compassionate thing to do to “put them out of their misery.” These situations can be distressing to everyone, including the hospice team. Fortunately much can be done to improve the situation and allow the body to shut down. 

The first thing to do is to remove any impediments to the body shutting down naturally. It is natural to lose the sensations of hunger and thirst at the end of life. In traditional medicine, families will often force nutrition and liquids on a patient even though the patient finds oral intake repellant. Families will often beg, scold, cajole, or even force their loved ones to eat or drink. Part of the reason for this is that providing food and drink in our culture is the primary way we show love and friendship to others. But, as the body shuts down, forced intake can actually increase suffering and prolong the dying process. Families often fear that they will be causing their loved-one’s death due to hunger and thirst if they do not force intake. But “hunger” and “thirst” are subjective perceptions that abate toward the end of life. One cannot die of something one does not have. Allowing the patient to set the pace and request food or liquid before giving it allows the patient more autonomy and dignity.

Should all infections be treated with antibiotics? As we get weaker at the end of our lives the intricate process of swallowing naturally becomes more difficult. Food, liquids, and secretions inevitably find their way into the lungs, and pneumonias are common. In addition, declining oral intake reduces urine flow and increases the risk of urinary infections. Both respiratory and urinary infections are exceedingly common toward the end of life.

Rather than seeing infections at the end of life as additional complications that cause more suffering, these infections are actually expected and welcome friends that can allow the dying person to escape the greater and more prolonged suffering of the terminal phases of cancer, dementia, emphysema and other progressive conditions. In addition, antibiotics themselves can cause suffering from nausea and vomiting, yeast infections of the mouth and groin, severe diarrhea, psychosis, rashes, and many other problems. Furthermore, the original (non-antibiotic-derived) infections are a natural part of the end of life process and will keep recurring no matter how many times they are treated. Forcing a loved one to endure multiple infections by aggressively treating each one is counter to the goals of comfort and dignity. Instead of focusing on the infection (the disease), we focus on symptom relief (the patient’s experience, i.e. the illness) with medication for control of pain, fever, shortness of breath, and nausea.

Frequently, patients who are going through the dying process will be transferred to hospice on oxygen for their shortness of breath. But at the end of life, supplemental oxygen is an artificial intrusion into the body’s natural process of shutting down. Again, such intrusions have been shown to do more harm than good. Supplemental oxygen can make someone experience increased levels of pain through stimulation of certain parts of the brain. Supplemental oxygen has also been shown to prolong the dying process. Studies have clearly shown that the breathlessness patients may experience at the end of life is just as well treated by a fan gently blowing on the patient’s face. By removing the oxygen and providing adequate medication for pain and anxiety, the dying process is not prolonged, and the uncomfortable tubing on the patient’s face as well as the annoying loud motor of the oxygen concentrator is also gone, leaving a more peaceful and dignified scene for the family.

The liberal use of narcotic pain medication does not hasten death, unless the only thing keeping someone breathing is the adrenaline and other stress hormones produced by pain or the feeling of suffocation. Providing adequate comfort prevents unnecessary anguish and distress prior to death. Studies show that patients who have their pain adequately controlled do not die sooner than similar patients without adequate pain control. The amount of narcotic required to stop someone’s breathing is vastly greater than the amount needed to keep them completely comfortable. It is unfortunate that so many people are allowed to die in pain out of caregiver fears of hastening death with pain medication.

Getting back to our terminally ill trio at the beginning of this article, another misconception that needs to be addressed is the effectiveness and success of CPR (cardio-pulmonary resuscitation). On fictional television shows CPR is portrayed as effective in saving lives about 70% of the time. In reality, the numbers are much different. There have been many different studies with varying statistics, but it is clear that as we age, the response to CPR declines dramatically. Even in patients in their forties with reversible conditions who have a witnessed cardiac arrest in the hospital, the survival to hospital discharge is less than 20%. For frail elderly nursing home patients who arrest at their facility, the survival rate approaches zero. Much trauma and distress can be avoided at the end of life depending on how patients and families are asked to fill out their advanced directives.

I have heard nurses and even physicians ask terminally ill patients, “If something happens and your heart stops do you want us to try to restart it with CPR or just let you die?” If all disease is curable and death is not inevitable then that statement is possibly a reasonable one to make to a patient. If a more honest and realistic approach is taken, the conversation would go more like this. “You know your condition will eventually result in your passing. When that occurs, trying to restart your heart would not only be futile, but would likely result in injuries to you including multiple broken ribs, punctured lungs and lacerated organs such as your liver or spleen. By choosing instead to allow natural death we can be sure to keep you comfortable and prevent additional unnecessary suffering.”

Regarding our dementia patient, some of the points mentioned above need to be discussed with the family. Regarding the placement of feeding tubes in terminally ill patients, they are far more often requested for the family’s emotional needs than for the comfort or wellbeing of the patient. Slow spoon-feeding of end-stage dementia patients actually results in longer average survival than patients who have feeding tubes placed. 

End-stage dementia patients develop what is known as anorexia-cachexia syndrome. When this occurs, the body is in the process of shutting down and is no longer desiring or utilizing nutrition to build protein. Any weight that is gained by forcing nutrition is only fat and fluid, not muscle or protein. Protein (albumen) levels in the blood drop and it becomes increasingly difficult to hold fluid inside the blood vessels. If fluids are artificially pumped into the system (either by feeding tube or IV) the fluids seep out into the tissues causing wide-spread swelling (edema/anasarca) which in turn seeps continuously from any nick, scratch or tear of the skin. Fluid seeps into the brain tissue and can cause headaches, nausea and possibly seizures. Fluid seeping into the lung tissue increases shortness of breath and can also be the result of heart failure from fluid overload. Formula pumped into the stomach flows up the esophagus and into the lungs causing recurrent pneumonia. Fluids down the GI tract result not only in frequent painful repositioning for changing of wet and dirty clothing, diapers and bedding; and urine and feces contribute to skin breakdown and poor wound healing often resulting in deep painful bed sores. It is widely felt that tube-feeding in cancer patients simply diverts more calories to the most metabolically active tissue in the body, the cancer itself. 

The body was designed to shut down comfortably and peacefully if there is no intrusion of artificial interruptions in the process. As the body loses its desires for food and fluid an interesting process occurs to protect the patient from suffering. As fluid intake diminishes there is a build-up of helpful chemicals in the blood. Urea is a breakdown product of protein and is flushed out of the system by healthy people in the urine (named for the urea it contains). Urea builds up when the body’s fluid stores are down. As it builds up it has the effect on the body of naturally relieving pain and anxiety and eventually peacefully puts the patient to sleep. Concurrently, the natural reduction in caloric intake stimulates the breakdown of fat. Chief metabolites of fat breakdown are called ketones. Ketones can allow the dying person to experience euphoria and a sense of spiritual clarity. These effects help to explain why fasting has been a spiritual discipline of most of the world’s major religions. Pumping in calories and fluids in a dying person deprives them of the benefits of these wonderful natural chemicals as well as compounds the suffering by the processes mentioned above. Yielding to the body’s natural protections (doing by not doing) allows the patient the maximum comfort and the least distress.

If there is a disease that is truly evil it is cancer. Cancer occurs when normal cells lose their ability to control their reproduction. Like terrorists, cancer cells can go unnoticed until it is too late. They hide behind and among the normal healthy cells in the body, and most things that kill them will also kill normal cells, especially normal cells that reproduce rapidly such as skin, hair follicles, mucous membranes and the lining of the intestinal tract. Cancers are fragile and their cells break off into the lymphatic system and the blood circulation as they destroy the normal tissues around them. These cells are carried to distant places in the body where they lodge and grow new tumors called metastases. They hijack the body’s physiology and not only steal the nutrition the body takes in but forces the body to tear down its normal tissue to fuel its chaotic expansion, resulting in dramatic weight loss.

Artificial nutrition, as mentioned above may simply accelerate the growth of the cancer. Surgery, chemotherapy, and radiation are the mainstays of cancer treatments, but the body can only take so much cutting, poisoning and burning. When the disease reaches a certain point, the combined destruction of normal cells by both the disease and the treatment makes further aggressive care counter-productive. When the prognosis without treatment is less than six months, the patient needs to clearly understand if the potentially extended time from further treatment will be time they can enjoy. The issue of quantity of life versus quality of life and be a difficult decision due to unknowns regarding the relative success and side effects that they personally may experience. More and more people are choosing quality of life through hospice rather than ruining their final days in the misery of cancer treatment side effects and endless doctor visits and tests. Most studies show that end-stage cancer patients not only experience less suffering as well as a higher quality of life on hospice, but they actually survive longer on average than those seeking aggressive care until the end.

Patients and families on hospice report that they are in most cases highly satisfied with the care they receive while on the program. Many regret not starting hospice sooner. The concept of treating the person rather than the disease, and crafting the plan for this care in the context of universal mortality reduces suffering and preserves dignity. Trusting the design of the body to care for itself to a great degree at the end of life reduces the work, stress and cost of caring for the dying. Acceptance of the universality of death allows us to put our lives into a paradigm where we can celebrate aging and peacefully prepare for eternity. 

One wonders if we would have grieved and mourned in the womb if we had known that our delivery was imminent and the security, familiarity and intimacy of the only world we had ever know would be coming to an end. But, as wonderful as life in the womb must have been, we could have never known of the beauty of nature and the cosmos, all the sensory pleasures of life, the depths of relationships of marriage, family and friendship that awaited us after our birth; joys and pleasures, experiences far beyond our comprehension as a fetus. Perhaps the pangs of death are simply the travail for another birth; our final birth to a new life, one fantastic beyond our comprehension. As a hospice physician sometimes I feel more like a celestial obstetrician!