What is “Optimal Nourishment” for Older Adults at the End of Life? A Conversation

While there is growing recognition of the complexity of required medical and personal decision making at the end of life, the interpretation of how nutrition support and hydration should be managed at this time remains somewhat poorly defined and is definitely controversial. The review by Dr. Heuberger in this issue of the Journal of Nutrition for the Elderly captures much of the available state of knowledge on the subject. The interpretation of these issues depends on many critical factors, including legal, religious, social, ethical, and clinical preferences and concerns. To expand a bit further on these sensitive and subjective topics, JNE conducted the following question-and-answer interviews with a team of experts on end-of-life care.

Connie W. Bales, PhD, RD, Editor of JNE and a nutrition scientist, interviewed Anthony N. Galanos, MD, a physician who is nationally recognized for his expertise in the palliative care field; Ms. Emma Neff, JD, an attorney and MD candidate with training in palliative care; and Roschelle A. Heuberger, PhD, RD, the author of the review on end-of-life care in this issue of JNE.

To Dr. Galanos: Nutrition is just one of many challenges that present for patients and families at the end of life. In your experience, how commonly do problems with hydration and/or nutrition support create difficulties for your older patients and their families? Can you give an example or two that illustrates the nature of these situations?

Reply from Dr. Galanos: This is a common problem in the care of elderly individuals at the end of life. I will focus my comments on the acute care hospital setting, though my colleagues who predominantly do nursing home care would have the same issue. I recently cared for a 99-year-old man with recurrent aspiration pneumonia. He had one child, a daughter, who had cared for him meticulously for the past several years. In that spirit, she had him hospitalized multiple times in the last six months for his recurrent aspiration. As a geriatrician and a palliative care doctor, I engaged this dutiful woman in discussion about goals of care. Initially, this gentleman was Full Code, and was ping-ponging back and forth between nursing home and hospital emergency department. On his last hospitalization, I was his General Medicine attending, and I met daily with the daughter. Many parts of his treatment were discussed: his automatic implanted cardiac defibrillator was disarmed; his code status was changed to “Do Not Resuscitate”; and antibiotics were stopped for his pneumonia because he was not getting better, yet he had terrible diarrhea from the antibiotics. At about three weeks into his hospital stay, he began refusing food and stopped eating. He voiced to several staff members that he was tired and ready to “meet my Maker,” but he never said this directly to his daughter. She wanted me to make sure he was fed. I told her that not eating or drinking was not painful or stressful in any way, but she was not certain of this and did her own research, which resulted in similar findings. Indeed, after 10 days of not eating or drinking, her dad showed no signs for the worse, and this was a comfort to his daughter. He died yesterday, peacefully, with his daughter and sister at his side in our hospital. It was peaceful and a “good death.” Think of the converse—if we had forced him to be fed, the consequences could have been much more negative for the patient (neither a tube down his nose or one into his stomach, could prevent aspiration). I admire that daughter who did not want to lose her dad but refused to have things done “to him rather than for him.” She is an inspiration to my entire general medicine team. And so it goes: a person lives a very long time, but while dying, loses his or her appetite, and really does not care to eat. Often, it is the family that insists upon eating as essential and so errs on the side of over-aggressive care rather than doing things “FOR their loved one, and not TO them.”

To Ms. Neff: We know that, with regards to artificial feeding and hydration, it is important that the wishes of the patient are clearly delineated in a legal document. However, without a good understanding of how nutrition/hydration may or may not benefit survival and quality-of-life outcomes, it may be difficult to be specific in such a document. What are your thoughts on how much knowledge lawyers and families have regarding these issues and on how nutritionists might be able to educate them further about the evidence base?

Reply from Ms. Neff: Food is an emotive issue for many people, and it deserves special attention in end-of-life planning. In my experience, lawyers and families know very little about how artificial nutrition and hydration impact survival and quality of life. Both families and lawyers would benefit from learning more, particularly about how nutrition affects the quality of life.

I volunteered with a legal aid organization in a New York City hospital, providing legal counsel on end-of-life planning to patients with chronic medical conditions. Many were eager to speak to someone about their wishes at the end of life, and nutrition was among the most common subjects raised. I recall one client in particular. An elderly woman with end-stage renal disease had come to the hospital's clinic for a follow-up appointment. A third generation New Yorker herself, she had three children and four grandchildren living in the city. She had never spoken to them about her wishes regarding end-of-life care. Without prompting, she brought up the case of Terry Schiavo, a Florida woman whose husband and parents became embroiled in a widely publicized legal debate regarding the ongoing provision of nutrition via a feeding tube. My client stated that she “did not want anything like that to happen to her.” She knew little about the provision of nutrition specifically. She knew much about family, however, and her greatest concern was the family strife brought on by Ms. Schiavo's state. She wanted to spare her family that experience.

My client's position is undoubtedly a common one. With more information about how nutrition may impact quality of life and longevity, people may begin to make more informed decisions about the kind of care and the duration of care that they would want. Clients often show considerable insight into how these issues may affect their families. However, few know how to clarify their wishes. By discussing nutrition early and often with nutritionists and other health care providers, persons nearing the end of life will be better prepared to delineate their wishes with lawyers and communicate those wishes to their families.

Lawyers should both encourage their clients to speak with a nutritionist and make an effort themselves to understand how nutrition affects the duration and quality of life. Ideally, education on nutrition and hydration should occur at the outset of end-of-life planning.

To Dr. Heuberger: Often in discussions of end-of-life issues, nutrition and hydration get lumped together. But are there different concerns for foods versus fluids? Can you highlight the metabolic effects of starvation and dehydration that would be important for nutritionists and other caregivers at the end of life to understand?

Reply from Dr. Heuberger: Feeding and hydration at the end of life are often considered together and treated as a singular dilemma. However, there is some value to understanding the separate effects of deprivation of food versus fluids. Starvation involves metabolic shifts in substrate utilization for energy. Cells switch to the use of proteins and fat from body tissues. There are accumulations of nitrogen from the deamination of proteins and from the conversion of substrates into beta hydroxybutarate and acetone, or ketones. The brain requires a fair amount of energy in the preferred form of glucose. In the absence of sufficient glucose, the brain becomes increasingly reliant on ketones. Ketones are not a preferred fuel source, and their use by brain tissue results in changes in neurochemistry. These changes include cerebellar, hypothalamic, and pituitary changes in hormone, peptide, and second messenger systems. The hypothalamus, which is the center of appetitive behavior and thirst response, increases the messenger systems for the production of endorphins and dynorphin through changes in the synthesis of several neuropeptides. Many of these changes have profound effects on hunger and satiety, sleep-wakefulness, and cognition. Long-standing starvation is associated with decreases in hunger and thirst sensation, increased somnolence and analgesia, and, in some instances, euphoria. Starvation also potentiates dehydration, as ketones cause shifts in body fluids.

Dehydration also acts on the brain, including the hypothalamus. Dehydration-induced changes in neurochemistry are mediated by a different set of hormones and peptides than starvation, but these changes also affect cognition, pain sensation (nociception), and thirst. Terminal dehydration is associated with fewer symptoms, less respiratory secretion, nausea, vomiting, and fluid shifting in patients at the end of life. There may be less urine production leading to less skin irritation and less need for physical manipulation of the patient. There may be mild thirst and dry mouth, which is best treated with good mouth care. Dehydration has, however, been associated with an increase in delirium. Dehydration may result in a concentration of metabolites and other substances in blood, including nitrogenous waste, electrolytes, and calcium, which further the sedative and apoptotic effects. In concert with long-standing starvation, there is a gradual shut down of systems, including those areas of the brain related to consciousness.

[Note from Dr. Bales: Dr. Heuberger has provided several references to support this response. They are listed at the end of the article.]

To Ms. Neff: As noted in the review, “medical paradigms dictate saving lives at all costs.” Yet we know that future efforts to contain soaring medical costs are likely to include some difficult decision making about end-of-life issues. How do you think nutrition support issues might come into play in this debate?

Reply from Ms. Neff: Recent articles in both the popular press and medical literature frequently focus on high-technology interventions as drivers for ever-increasing medical care costs. While technologically complex innovations certainly increase costs overall, I believe that curbing costs will ultimately require a broader reexamination of the goals of medical care. Nowhere is this more apparent than in care at the end of life.

The question of how to contain the ever-increasing costs of medical care will likely remain at the forefront of health policy debates for some time. Conceptually and practically, any approach to cost containment must balance multiple considerations, including equity of access, quality of life, and duration of life. A rational policy approach in this area still appears some distance away. Nevertheless, as health care providers and policymakers consider the issue, nutrition at the end of life must be considered.

I think it likely that nutrition will play a central role in future debates regarding end-of-life care in the setting of limited health care resources. Any medical care that prolongs life, including nutrition, may contribute to an increase in overall medical expenditures. More important still are the quality-of-life implications of nutrition and hydration in end-of-life care.

To Ms. Neff: It seems likely that the legal aspects of this issue vary considerably, determined by whether a national, international, federal, state, or case law statute is being applied. What advice would you give medical care providers for understanding the relevant legal concerns on a case-by-case basis?

Reply from Ms. Neff: The legal framework governing end-of-life care generally and nutrition in particular is certainly complex. Though the U.S. Constitution establishes minimum standards (for example, the U.S. Supreme Court has assumed, though never decided, that a competent adult may refuse nutrition, hydration, and life-saving medical care), in most instances the issue is a matter of state law. State legislatures have broad authority to establish legal rules for end-of-life decision making, and different states have developed different standards. State case law governs if a statute does not address the issue in question, though how courts will approach the issue may be prescribed in the first instance by the state legislature. Wherever possible, health care providers should guide families with an awareness of the state law that will apply if consensus cannot be achieved.

Within the broader context of end-of-life decisions, nutrition poses special problems. One basic question is whether nutrition is “life-saving medical care” of the sort usually subject to statutes regulating living wills and health care proxy decision making. A number of states specify whether nutrition and hydration are considered life-saving treatment and whether a health care proxy can withdraw them when a patient is non-communicative. Different states have reached opposite conclusions as to whether nutrition constitutes medical care that can be withdrawn absent a patient's clearly expressed wishes. Health care providers should become familiar with their state law whenever possible.

To Ms. Neff: There is an important potential barrier to the ability of health care professionals to provide optimal nutritional care at the end of life that we have not yet addressed in our question and answer session. That is the issue of perceived professional liability and fear of legal repercussions. What assurances can we offer to help health care practitioners, including nutritionists, feel secure in telling families that withholding or withdrawing artificial nutrition and/or hydration is in the patient's best interest?

Reply from Ms. Neff: In terms of potential tort (or malpractice) liability, I am aware of no cases where a family has successfully sued a health care provider for providing information regarding the effects of providing or withholding care of any sort, nutrition included. A successful tort claim requires an injury that can be causally traced to a failure to provide the quality of care required by law. Ultimate decisions on whether to withdraw care often lie, both legally and practically, with families, and not with care providers. Indeed, most prominent legal battles regarding end-of-life care involve disputes over whether care can be withdrawn and not tort claims against providers. A nutritionist or other health care provider who informs a family about the benefits and drawbacks to continued nutritional care, and who counsels a family in line with available evidence, should do so with confidence.

To Dr. Galanos: With all the information we have covered here, it seems like we should be well-equipped to guide our patients on the issues of nutrition support and hydration at the end of life. When it comes to explaining all this in lay terms, however, we may still feel somewhat at a loss. Can you review the most important points and discuss how to explain them in a simple, sensitive, and compassionate way?

Reply from Dr. Galanos : When it comes to any decision surrounding end-of-life care, there is the academic, evidence-based approach, and then there is the acknowledgement of the psychological impact of making decisions for yourself or your loved ones because the stakes are so high and the events are so final. So, when I counsel a family, I put on two hats. The first is that I consider my obligations as an evidence-based physician, and then the second hat is, “If I were a member of this family, what is it I should know?” That helps me stay grounded and make sure that I have covered with the family what they will need to know to make good decisions.

Whatever the issue, particularly one as emotional as nutrition and feeding, I reassure the family that whatever they decide, it is not their decision that will dictate the outcome but rather the disease process. In fact, I often summarize that by saying to a patient or his family, “Biology always wins.” So, if a family decides NOT to place a feeding tube, in addition to reassuring them that that will not result in any pain or discomfort to the patient not to eat or drink, I then add, “Your dad will die because he has terminal cancer and NOT because you made a decision not to violate his stomach with a feeding tube.” We need to acknowledge the underlying disease process and empathize with the family, rather than continue to offer to do things to the patient. How the story ends, every person's death, is the person's legacy, and we can do so much to contribute to the healing of a family if we phrase our education correctly and understand that it is the patient's and family's moment and not ours. It is then that we drop all worry about our own performance and focus on the comfort of the patient and family. It is also then that we acknowledge the power of biology, however we might try to bend it, and give our patients dignified deaths…devoid of tubes and medical armor.