Forgoing Potentially Life-Sustaining Treatments
A necessary goal of high-quality end-of-life (EOL) care is the alleviation of distressing symptoms that can lead to suffering. An important strategy to achieve that goal is to avoid or limit medical interventions of limited effectiveness and high burden to the patients. There is, however, a great deal of confusion, anxiety, and miscommunication around the question of whether to utilize potentially life-sustaining treatments (LSTs) such as mechanical ventilation, total parenteral nutrition, and dialysis in the final weeks or days of life. To ensure that the best interests of the patient—as communicated by the patient, family, or surrogate decision maker—determine the decisions about LSTs, discussions can be organized around the following questions:
- What are the patient’s goals of care?
- How do the potential benefits of LST contribute to achieving the goals of care, and how likely is the desired outcome?
- How do the potential harms of LST detract from the patient’s goals of care, and does the likelihood of achieving the desired outcome or the value the patient assigns to the outcome justify the risk of harm?
- What considerations—other than the potential benefits and harms of LST—are relevant to the patient or surrogate decision maker?
- What other resources—e.g., chaplain or clinical ethicist—would help the patient or family with decisions about LST?
Medicine is a moral enterprise. The decisions clinicians make are often highly subjective and value laden but seem less so because, equally often, there is a shared sense of benefit, harm, and what is most highly valued. Occasionally, disagreements arise or a provider is uncertain about what is ethically permissible. For example, an oncologist may favor the discontinuation or avoidance of LST, given the lack of evidence of benefit or the possibility of harm—including increasing the suffering of the dying person by prolonging the dying process—or based on concerns that LST interferes with the patient accepting that life is ending and finding peace in the final days. A provider also may be uncertain about whether withdrawing treatment is equivalent to causing the patient’s death. Conversely, the patient may continue to request LST on the basis of personal beliefs and a preference for potential prolonged life, independent of the oncologist’s clinical risk-benefit analysis.
Individual values inform the moral landscape of the practice of medicine. The potential conflicts described above are opportunities to refine clinicians’ understanding of their beliefs and values and to communicate their moral reasoning to each other as a sign of integrity and respect. As clinicians struggle to communicate their reasons for recommendations or actions, the following three questions may serve as a framework:
- Who makes the decision?
- By what criteria do they make the decision?
- How are conflicts among decision makers resolved?
In the event of conflict, an ethics consult may be necessary to identify the sources of disagreement and potential solutions, although frameworks have been proposed to guide the clinician. The following paragraphs summarize information relevant to the first two questions.
Respect for patient autonomy is an essential element of the relationship between oncology clinician and patient. Respect for autonomy encourages clinicians to elicit patients’ values, goals of care, and preferences and then seek to provide treatment or care recommendations consistent with patient preferences. Autonomy is primarily a negative right to be free from the interference of others or, in health care, to refuse a recommended treatment or intervention. On the basis of potential harm to others or deliberate harm to themselves, there are limits to what patients can expect in terms of their requests. More controversial limits are imposed when oncology clinicians feel they are asked to violate their ethical integrity or when the medical effectiveness of a treatment does not justify the burden.
Perceived conflicts about the issue of patient autonomy may be avoided by recalling that promoting patient autonomy is not only about treatments administered but also about discussions with the patient. It is acceptable for oncology clinicians to share the basis for their recommendations, including concerns such as clinician-perceived futility.[6,7]
The following criteria to consider forgoing a potential LST are not absolute and remain a topic of discussion and debate; however, they offer a frame of reference for deliberation:
- The possibility of forgoing a potential LST is worth considering when either the clinician perceives that the medical effectiveness of an intervention is not justified by the medical risks or the patient perceives that the benefit (a more subjective appraisal) is not consistent with the burden.
- The goal of forgoing a potential LST is to relieve suffering as experienced by the patient and not to cause the death of the patient. Measures that deliberately seek to end the life of the patient are more problematic.
- There is probably no difference between withholding or withdrawing a potential LST because the goal in both cases is to relieve or avoid further suffering.
- The burden and suffering associated with medical interventions from the patient’s perspective are the most important criteria for forgoing a potential LST. Distinctions between simple interventions (e.g., intravenous hydration) and more complicated interventions (e.g., mechanical ventilation) do not determine supporting the patient’s decision to forgo a treatment.
Religious and Spiritual Beliefs
Awareness of the importance of religious beliefs and spiritual concerns within medical care has increased substantially over the last decade. (Refer to the PDQ summary on Spirituality in Cancer Care for a review.) National consensus guidelines were published in 2009 and recommended the following:
- That all patients receive a screening assessment for religious and spiritual concerns, followed by a more complete spiritual history.
- That all patients receive a formal assessment by a certified chaplain.
- That such information is placed in patient records, with follow-up at all appropriate times, including hospitalization at the EOL.
An interprofessional approach is recommended: medical personnel, including physicians, nurses, and other professionals such as social workers and psychologists, are trained to address these issues and link with chaplains, as available, to evaluate and engage patients. A survey of nurses and physicians revealed that most nurses (74%) and physicians (60%) desire to provide spiritual care, which was defined as “care that supports a patient’s spiritual health.” The more commonly cited barriers associated with the estimated amount of spiritual care provided to patients included inadequate training and the belief that providing spiritual care is not part of the medical professional’s role. Most nurses (79%) desired training in spiritual care; fewer physicians (51%) did.
Evidence strongly supports that most cancer patients desire dialogue about these issues with their physicians, other staff as appropriate, and hospital chaplains, if indicated. About half of patients acknowledge that they are not receiving such support from a religious community, either because they are not involved in one or because they do not perceive their community as supportive. Regardless of such support, patients may report substantial spiritual distress at the EOL, ranging from as few as 10% or 15% of patients to as many as 60%. (Refer to the PDQ summary on Spirituality in Cancer Care for more discussion about spiritual distress.) Distress may range from anger at God to a feeling of unworthiness, to lack of meaning. Such distress, if not addressed, may complicate EOL decisions and increase depression.
Finally, it has been shown that addressing religious and spiritual concerns earlier in the terminal-care process substantially decreases the likelihood that patients will request aggressive EOL measures. In contrast, patients who have received strong support from their own religious communities alone are less likely to enter hospice and more likely to seek aggressive EOL care. It has also been shown that providing more comprehensive palliative care increases spiritual well-being as the EOL approaches.
The potential indications for artificial hydration in the final weeks or days of life may be broadly defined by the underlying goal of either temporarily reversing or halting clinical deterioration or improving the comfort of the dying patient. Although artificial hydration may be provided through enteral routes (e.g., nasogastric tubes or percutaneous gastrostomy tubes), the more common route is parenteral, either intravenously by catheter or subcutaneously through a needle (hypodermoclysis).
Although uncontrolled experience suggested several advantages to artificial hydration in patients with advanced cancer, a well-designed, randomized trial of 129 patients enrolled in home hospice demonstrated no benefit in parenteral hydration (1 L of normal saline infused subcutaneously over 4 hours) compared with placebo (100 mL of normal saline infused subcutaneously over 4 hours). There were no differences in survival, symptoms, quality of life, or delirium.
A prospective evaluation of the outcomes of 161 patients with advanced-stage abdominal cancers who received parenteral hydration in accordance with Japanese national guidelines near the EOL suggests there is little harm or benefit in hydration. The median survival of the cohort was 20 days (range, 1–84 days); the mean volume of parenteral hydration was 912 ± 495 mL/day. There were no significant trends in global quality of life, discomfort, or physical symptoms for ill or good; signs of fluid retention were common but not exacerbated. However, patients expressed a high level of satisfaction with hydration and felt it was beneficial. The guidelines specify that patients with signs of volume overload should receive less than 1 L of hydration per day. When the investigators stratified patients into two groups—those who received at least 1 L of parenteral hydration per day and those who received less than 1 L/day—the prevalence of bronchial secretions was higher and hyperactive delirium was lower in the patients who received less than 1 L.
Any discussion about the risks or benefits of artificial hydration must include a consideration of patient and family perspectives. Requests for artificial hydration or the desire for discussions about the role of artificial hydration seem to be driven by quality-of-life considerations as much as considerations for life prolongation. Families may be helped with this decision when clinicians explain that use of artificial hydration in patients with cancer at the EOL has not been shown to help patients live longer or improve quality of life. Additionally, families can be educated about good mouth care and provision of sips of water to alleviate thirst. The oncology clinician needs to approach these conversations with an open mind, recognizing that the harm caused by artificial hydration may be minimal relative to the perceived benefit, which includes reducing fatigue and increasing alertness.
The following discussion excludes patients for whom artificial nutrition may facilitate further anticancer treatment or for whom bowel obstruction is the main manifestation of their advanced cancer and for whom enteral or total parenteral nutrition may be of value. Furthermore, artificial nutrition as a supplement may benefit the patient with advanced cancer who has a good performance status, a supportive home environment, and an anticipated survival longer than 3 months.[26,27]
The decisions about whether to provide artificial nutrition to the dying patient are similar to the decisions regarding artificial nutrition. The American Academy of Hospice and Palliative Medicine (AAHPM) recommends that individual clinical situations be assessed using clinical judgment and skill to determine when artificial nutrition is appropriate. Recognizing that the primary intention of nutrition is to benefit the patient, AAHPM concludes that withholding artificial nutrition near the EOL may be appropriate medical care if the risks outweigh the possible benefit to the patient.
Food should be offered to patients consistent with their desires and ability to swallow. The benefit of providing artificial nutrition in the final days to weeks of life, however, is less clear. One study has concluded that artificial nutrition—specifically, parenteral nutrition—neither influenced the outcome nor improved the quality of life in terminally ill patients.
Providing artificial nutrition to patients at the EOL is a medical intervention and requires establishing enteral or parenteral access. Considerations of financial cost, burden to patient and family of additional hospitalizations and medical procedures, and all potential complications must be weighed against any potential benefit derived from artificial nutrition support.
In discussions with patients, the oncology clinician needs to recognize that the patient perception of benefit is worth exploring; as a compromise or acknowledgment of respect for the patient’s perspective, a time-limited trial may be warranted.
The administration of anti-infectives, primarily antibiotics, in the last days of life is common, with antibiotic use reported in patients in the last week of life at rates ranging from 27% to 78%.[31-33] Because of wide heterogeneity in the measurement of antibiotic use, assessment of symptom response, and lack of comparisons between those receiving antimicrobials with those not receiving them, the benefit of antimicrobials is currently hard to define. The infections most likely to respond are urinary tract, skin, or eye infections; those less likely to be managed by antimicrobials, such as pneumonia, may be better managed with symptomatic measures.[34-36] One additional setting in which antimicrobial use may be warranted is that of contagious public health risks such as tuberculosis. There is also concern that the continued use of antimicrobials in the last week of life leads to increased risk of developing drug-resistant organisms.
In general, most practitioners agree with the overall focus on patient comfort in the last days of life rather than providing curative therapies with unknown or marginal benefit, despite their ability to provide the therapy.[31,34,36-38]
Anemia is common in patients with advanced cancer; thrombocytopenia is less common and typically occurs in patients with progressive hematological malignancies. The decision to transfuse either packed red cells or platelets is based on a careful consideration of the overall goals of care, the imminence of death, and the likely benefit and risks of transfusions. The decision to use blood products is further complicated by the potential scarcity of the resource and the typical need for the patient to receive transfusions in a specialized unit rather than at home.
There are no randomized or controlled prospective trials of the indications, safety, or efficacy of transfused products. It should be recognized, however, that many patients will have received transfusions during active disease treatment or periods of supportive care. Such patients may have notions of the importance of transfusions related to how they feel and their life expectancies.
Several considerations may be relevant to the decision to transfuse red blood cells:
- The response in terms of improvement in fatigue and breathlessness is modest and transitory.
- A significant proportion of patients die within 14 days of transfusion, which raises the potential for harm.
- Decisions to transfuse red cells are based on symptoms and not a trigger value.
- Transfusion of rare blood types or human leukocyte antigen–compatible platelet products is more difficult to justify.
Broadly defined, resuscitation includes all interventions that provide cardiovascular, respiratory, and metabolic support necessary to maintain and sustain the life of a dying patient. It is important for patients, families, and proxies to understand that choices may be made to specify which supportive measures, if any, are given preceding death and at the time of death. People often believe that there is plenty of time to discuss resuscitation and the surrounding issues; however, many dying patients do not make choices in advance or have not communicated their decisions to their families, proxies, and the health care team. If these issues are unresolved at the time of EOL events, undesired support and resuscitation may result. Studies suggest that this aggressive care is associated with worse patient quality of life and worse adjustment to bereavement for loved ones.[42,43]
Narrowly defined, a do-not-resuscitate (DNR) order instructs health care providers that, in the event of cardiopulmonary arrest, cardiopulmonary resuscitation (CPR, including chest compressions and/or ventilations) should not be performed and that natural death be allowed to proceed. DNR orders must be made before cardiac arrest and may be recommended by physicians when CPR is considered medically futile or would be ineffective in returning a patient to life. A DNR order may also be made at the instruction of the patient (or family or proxy) when CPR is not consistent with the goals of care.
It is advisable for a patient who has clear thoughts about these issues to initiate conversations with the health care team (or appointed health care agents in the outpatient setting) and to have forms completed as early as possible (i.e., before hospital admission), before the capacity to make such decisions is lost. Although patients with end-stage disease and their families are often uncomfortable bringing up the issues surrounding DNR orders, physicians and nurses can tactfully and respectfully address these issues appropriately and in a timely fashion. Lack of standardization in many institutions may contribute to ineffective and unclear discussions around DNR orders.
- Kaldjian LC: Communicating moral reasoning in medicine as an expression of respect for patients and integrity among professionals. Commun Med 10 (2): 177-83, 2013. [PUBMED Abstract]
- Pellegrino ED: Decisions to withdraw life-sustaining treatment: a moral algorithm. JAMA 283 (8): 1065-7, 2000. [PUBMED Abstract]
- Goold SD, Williams B, Arnold RM: Conflicts regarding decisions to limit treatment: a differential diagnosis. JAMA 283 (7): 909-14, 2000. [PUBMED Abstract]
- Billings JA, Krakauer EL: On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med 171 (9): 849-53, 2011. [PUBMED Abstract]
- The ethics of respect for persons: lying, cheating, and breaking promises and why physicians have considered them ethical. In: Veatch RM: The Basics of Bioethics. 3rd ed. Upper Saddle River, NJ: Pearson Education, Inc., 2012, pp 62-83.
- Blinderman CD, Krakauer EL, Solomon MZ: Time to revise the approach to determining cardiopulmonary resuscitation status. JAMA 307 (9): 917-8, 2012. [PUBMED Abstract]
- Swindell JS, McGuire AL, Halpern SD: Beneficent persuasion: techniques and ethical guidelines to improve patients' decisions. Ann Fam Med 8 (3): 260-4, 2010 May-Jun. [PUBMED Abstract]
- Olsen ML, Swetz KM, Mueller PS: Ethical decision making with end-of-life care: palliative sedation and withholding or withdrawing life-sustaining treatments. Mayo Clin Proc 85 (10): 949-54, 2010. [PUBMED Abstract]
- Huddle TS: Moral fiction or moral fact? The distinction between doing and allowing in medical ethics. Bioethics 27 (5): 257-62, 2013. [PUBMED Abstract]
- Rhymes JA, McCullough LB, Luchi RJ, et al.: Withdrawing very low-burden interventions in chronically ill patients. JAMA 283 (8): 1061-3, 2000. [PUBMED Abstract]
- Puchalski C, Ferrell B, Virani R, et al.: Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 12 (10): 885-904, 2009. [PUBMED Abstract]
- Balboni MJ, Sullivan A, Enzinger AC, et al.: Nurse and physician barriers to spiritual care provision at the end of life. J Pain Symptom Manage 48 (3): 400-10, 2014. [PUBMED Abstract]
- Phelps AC, Lauderdale KE, Alcorn S, et al.: Addressing spirituality within the care of patients at the end of life: perspectives of patients with advanced cancer, oncologists, and oncology nurses. J Clin Oncol 30 (20): 2538-44, 2012. [PUBMED Abstract]
- Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 25 (5): 555-60, 2007. [PUBMED Abstract]
- Balboni TA, Balboni M, Enzinger AC, et al.: Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life. JAMA Intern Med 173 (12): 1109-17, 2013. [PUBMED Abstract]
- Balboni TA, Paulk ME, Balboni MJ, et al.: Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 28 (3): 445-52, 2010. [PUBMED Abstract]
- Zimmermann C, Swami N, Krzyzanowska M, et al.: Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet 383 (9930): 1721-30, 2014. [PUBMED Abstract]
- Boland E, Johnson M, Boland J: Artificial hydration in the terminally ill patient. Br J Hosp Med (Lond) 74 (7): 397-401, 2013. [PUBMED Abstract]
- Bruera E, Hui D, Dalal S, et al.: Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 31 (1): 111-8, 2013. [PUBMED Abstract]
- Yamaguchi T, Morita T, Shinjo T, et al.: Effect of parenteral hydration therapy based on the Japanese national clinical guideline on quality of life, discomfort, and symptom intensity in patients with advanced cancer. J Pain Symptom Manage 43 (6): 1001-12, 2012. [PUBMED Abstract]
- Del Río MI, Shand B, Bonati P, et al.: Hydration and nutrition at the end of life: a systematic review of emotional impact, perceptions, and decision-making among patients, family, and health care staff. Psychooncology 21 (9): 913-21, 2012. [PUBMED Abstract]
- Malia C, Bennett MI: What influences patients' decisions on artificial hydration at the end of life? A Q-methodology study. J Pain Symptom Manage 42 (2): 192-201, 2011. [PUBMED Abstract]
- McCann RM, Hall WJ, Groth-Juncker A: Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA 272 (16): 1263-6, 1994. [PUBMED Abstract]
- Raijmakers NJ, Fradsham S, van Zuylen L, et al.: Variation in attitudes towards artificial hydration at the end of life: a systematic literature review. Curr Opin Support Palliat Care 5 (3): 265-72, 2011. [PUBMED Abstract]
- Bozzetti F: Total parenteral nutrition in cancer patients. Curr Opin Support Palliat Care 1 (4): 281-6, 2007. [PUBMED Abstract]
- McCallum PD, Fornari A: Nutrition in palliative care. In: Elliott L, Molseed LL, McCallum PD, eds.: The Clinical Guide to Oncology Nutrition. 2nd ed. Chicago, Ill: American Dietetic Association, 2006, pp 201-7.
- Orrevall Y, Tishelman C, Permert J: Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families. Clin Nutr 24 (6): 961-70, 2005. [PUBMED Abstract]
- Statement on Artificial Nutrition and Hydration Near the End of Life. Chicago, Ill: American Academy of Hospice and Palliative Medicine, 2013. Available online. Last accessed February 18, 2015.
- Torelli GF, Campos AC, Meguid MM: Use of TPN in terminally ill cancer patients. Nutrition 15 (9): 665-7, 1999. [PUBMED Abstract]
- Dy SM: Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature. Am J Hosp Palliat Care 23 (5): 369-77, 2006 Oct-Nov. [PUBMED Abstract]
- Rosenberg JH, Albrecht JS, Fromme EK, et al.: Antimicrobial use for symptom management in patients receiving hospice and palliative care: a systematic review. J Palliat Med 16 (12): 1568-74, 2013. [PUBMED Abstract]
- Albrecht JS, McGregor JC, Fromme EK, et al.: A nationwide analysis of antibiotic use in hospice care in the final week of life. J Pain Symptom Manage 46 (4): 483-90, 2013. [PUBMED Abstract]
- Nakagawa S, Toya Y, Okamoto Y, et al.: Can anti-infective drugs improve the infection-related symptoms of patients with cancer during the terminal stages of their lives? J Palliat Med 13 (5): 535-40, 2010. [PUBMED Abstract]
- Ford PJ, Fraser TG, Davis MP, et al.: Anti-infective therapy at the end of life: ethical decision-making in hospice-eligible patients. Bioethics 19 (4): 379-92, 2005. [PUBMED Abstract]
- Hickman SE, Nelson CA, Moss AH, et al.: The consistency between treatments provided to nursing facility residents and orders on the physician orders for life-sustaining treatment form. J Am Geriatr Soc 59 (11): 2091-9, 2011. [PUBMED Abstract]
- Lloyd-Williams M, Payne S: Can multidisciplinary guidelines improve the palliation of symptoms in the terminal phase of dementia? Int J Palliat Nurs 8 (8): 370-5, 2002. [PUBMED Abstract]
- Niederman MS, Berger JT: The delivery of futile care is harmful to other patients. Crit Care Med 38 (10 Suppl): S518-22, 2010. [PUBMED Abstract]
- LeGrand SB, Walsh D: Comfort measures: practical care of the dying cancer patient. Am J Hosp Palliat Care 27 (7): 488-93, 2010. [PUBMED Abstract]
- Preston NJ, Hurlow A, Brine J, et al.: Blood transfusions for anaemia in patients with advanced cancer. Cochrane Database Syst Rev 2: CD009007, 2012. [PUBMED Abstract]
- Uceda Torres ME, Rodríguez Rodríguez JN, Sánchez Ramos JL, et al.: Transfusion in palliative cancer patients: a review of the literature. J Palliat Med 17 (1): 88-104, 2014. [PUBMED Abstract]
- Smith LB, Cooling L, Davenport R: How do I allocate blood products at the end of life? An ethical analysis with suggested guidelines. Transfusion 53 (4): 696-700, 2013. [PUBMED Abstract]
- Wright AA, Zhang B, Ray A, et al.: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300 (14): 1665-73, 2008. [PUBMED Abstract]
- Miyashita M, Morita T, Sato K, et al.: Factors contributing to evaluation of a good death from the bereaved family member's perspective. Psychooncology 17 (6): 612-20, 2008. [PUBMED Abstract]
- Zhukovsky DS, Hwang JP, Palmer JL, et al.: Wide variation in content of inpatient do-not-resuscitate order forms used at National Cancer Institute-designated cancer centers in the United States. Support Care Cancer 17 (2): 109-15, 2009. [PUBMED Abstract]