Patient care: a core competency for surgical palliative care

The salient issues and practices for surgical palliative care are addressed herein using the heading of “Patient care” from the outline of core competencies identified by the Surgical Palliative Care Task Force of the American College of Surgeons.

“Possess the capacity to guide the transition from curative and palliative goals of treatment to palliative goals alone based on patient information and preferences, scientific and outcomes evidence, and sound clinical judgment.”

The barriers to transition from curative to palliative goals are similar to the barriers already identified in achieving effective pain control. They consist of the practitioner’s cognitive gaps and attitudes, socioeconomic realities, and cultural differences. These barriers are not all imposed by the practitioner or the medical care system. A noncompliant patient reporting poor pain relief despite having a valid and appropriate unfilled prescription in hand or a family’s insistence on pursuing unrealistic treatments point to other barriers that should be considered as some of the etiologies for unrelieved pain. Overcoming these barriers requires the practitioner to genuinely believe that the relief of suffering is a concurrent, not a subservient, goal to the preservation or prolongation of life.

Palliation is, fundamentally, a moral calling. If the willingness to alleviate suffering is present, success can follow because the necessary evidence base for many effective interventions is present and growing. The skills required to relieve suffering, such as pain management and the empathic response, can be learned. Sound clinical judgment in palliative care is no different than in other venues. It assumes the capacity to never make some types of mistakes and to make the remainder infrequently.

“Perform an assessment and gather essential clinical information about symptoms, pain, and suffering.”

Patient assessment for palliative care or “seeing the big picture” addresses four dimensions of the patient’s experience: physical, emotional (psychologic), social (economic), and spiritual (existential). The American Medical Association sponsored Education of Physicians on End-of-Life Care (EPEC) curriculum designates nine domains of interest ( Box 3 ) when performing an assessment, although all of these domains are not always addressed or appropriate to address. Palliative care assessment is not only an intervention that helps establish trust but also provides the opportunity for triage. Unrelieved somatic pain rating 8 out of 10 in intensity needs to be addressed before addressing spiritual needs even if these are ultimately more important to the patient. Over the course of a series of conversations, all of the relevant domains can be assessed in a relaxed fashion by the surgeon or other members of the interdisciplinary team. Palliative care assessment forms and scoring systems are available, although development of a palliative care assessment specific for the field of otolaryngology remains an opportunity. Validated tools specific for the assessment of pain and nonpain symptoms (dyspnea, depression ), which are part of the overall palliative care assessment, are available.

“Perform palliative procedures competently and with sound judgment to meet patient goals of care at the end of life.” “Provide management of pain and other symptoms to alleviate suffering.” “Communicate bad news and poor prognoses effectively and compassionately.”

A narrative abstracted from my practice experience demonstrates these patient care competencies. A 54-year-old unemployed divorced man with a 60-pack per year smoking history presented to the emergency room with a several month history of left-sided neck pain, dysphagia, and a 40-pound weight loss. His pain was self-described as constant, aching, and burning. He reported minimal relief with acetaminophen and hydrocodone that had been previously prescribed for dental problems. On physical examination, he appeared to be an older middle-aged man with pallor and temporal wasting. His affect was flat, although he appeared apprehensive with minimal physical exertion. Respirations were 40 per minute, shallow, and stridorous. Bulky, hard, confluent adenopathy of the left side of the neck was present. Oral examination was limited due to marked trismus. The hematocrit was 32, serum albumin 2.5, and total protein 5.4 g/L. In the emergency room, he uttered, “I can’t breathe…pain…getting worse. Please…do what you need to do.…” Following informed consent, he was promptly taken to the operating room where urgent tracheostomy was performed. Further evaluation of the oral cavity under general anesthesia revealed poor dentition and a large fungating mass extending from the nasopharynx down to the vallecula. A biopsy of the mass and a feeding gastrostomy were performed. Biopsy demonstrated poorly differentiated, keratinizing, squamous cell carcinoma. Chest CT showed multiple nodules consistent with metastases.

On the first postoperative day he was clinically stable and had tube feedings initiated. Consultation was sought from medical and radiation oncologists, although the patient adamantly declined these interventions, saying he “just wanted to go home.” The attending surgeon, exasperated with the patient’s therapeutic nihilism, consulted the palliative care service to “get a DNR order and get hospice involved.”

During the initial interview, the patient was alert and oriented. He complained (when asked) of pain in the left side of the neck and upper abdomen with an intensity of 8 on a scale of 10. He had been declining his prescribed analgesic of oxycodone, 10 mg per percutaneous endoscopic gastrostomy tube every 4 hours. On examination, his brow was furrowed, respirations were 28 per minute and shallow, and his abdomen was flat and tense with occasional bowel sounds. The tracheostomy and gastrostomy were functioning. Accompanying him was his live-in companion of several years. The patient gave his preference and permission to discuss his care with her separately. Before this interview, he was persuaded to take his analgesic to “lessen his shortness of breath and overall discomfort” and was told we would return soon to review our discussion if he wished.

During the interview with the patient’s companion, she commenced speaking with a burst of tears and then gave a narrative of the past several months during which time the patient had become increasingly symptomatic but refused seeking medical care because of a lack of insurance and, she suspected, the fear of confirming the presence of cancer. He attributed his symptoms to ongoing dental problems. He had tried a succession of “alternative” remedies for his swelling in addition to gargling with mouthwash. His pain had led him to try ice packs, heat, and old pain prescriptions. After he had lost considerable weight, he became more depressed and had talked about “wanting to end it all.” Witnessing this, she said she felt helpless, exhausted, and “at wit’s end.” She acknowledged feeling calmer now that he was under medical care, although she described herself as “still in a state of shock.” When asked what she knew of his condition, she responded, “I know he has cancer of the neck, but not much more than that.” When asked if she wanted to know more details about its stage and prognosis, she said she was unsure. After telling her that that information would be available when she wished to have it, the discussion was then directed to assessing the patient’s family support, spiritual history, economic situation, and the immediate strategy to improve his physical and mental comfort.

Upon seeing her companion more relaxed after this discussion, she, now more composed and hopeful, asked for information about his disease and its prognosis. In the presence of his nurse and with a box of tissue paper nearby, she confirmed she preferred direct nonmedical terminology. She was given information building on the fact that she already was aware he had cancer, “You mentioned your partner has cancer of the neck. That much we know is true, as confirmed by the biopsy that was just done. When we want to determine the extent of cancer, we stage it. The stage of the cancer is a guide for its prognosis and treatment. Unfortunately, your partner’s cancer is in its most advanced stage and is not curable at this point.” The patient’s partner, tearful and looking down, shook her head in acknowledgment. After a silent pause, the surgeon stated as he offered her a tissue, “I can see how distressing this news is for you, even though you may have suspected this.” She nodded affirmatively again and then looking directly at the surgeon asked, “How much time does he have?” The surgeon responded, “That depends on several things—some under our control, others not. His decisions about the type of treatment could impact survival, though unforeseen events such as infection could lessen his time of survival, even if treated. Untreated for cancer he is unlikely to survive beyond several months, especially if he declines tube feeding or forced hydration in the near future. Exceptions to the usual course of untreated disease of this extent are exceptional. We can’t be sure exactly how his course will run, but I can be sure we will be there to help you, regardless of the type of treatment he selects.” Imploringly she asked, “What do we do now?” The surgeon responded, “Let’s see if he is comfortable, first. He may want to rest right now, but I will ask him if he would like to know what we discussed. If he wants to know, I will ask him what I asked you: When would he like to talk about it and in how much detail? If he just wants to rest after the ordeal of the past day (and weeks), we will arrange a time at his convenience and, in the meantime, you can reach me with questions at this number [card given].”

“Conduct a patient and family meeting regarding advance directives and end-of-life decisions.”

The family meeting is a critical tool for effective palliative care, whether conveying adverse news, resolving conflict, or determining goals of care. Scheduled family meetings for determination of care goals have been shown to result in several favorable outcomes, among them reduced length of ICU admissions and increased rates of organ donation. General guidelines for a family meeting recommend a previously agreed upon agenda, punctuality, privacy, adequate seating, nonintrusion by pagers, a facilitator for discussion, and a professional medical translator when needed. The subject of advance directives or a “living will” and “do not resuscitate” (DNR) order may be broached but should only be done so after gentle probing for the degree of insight of the patient and family and establishing a relaxed context for asking about specific medical preferences. This discussion may proceed by asking, “Have you ever had a chance to discuss (eg, with your wife or a family member) what your preferences for medical treatment are in the event of a serious or life-limiting illness? Many people have not discussed these matters because this sounds frightening, but not as frightening as leaving these decisions to chance. If you couldn’t tell us yourself for some reason, whom would you designate to speak on your behalf? Some people have answers to these questions in what is referred to as a ‘living will’ or ‘advance directives.’ Do you have one?”

A well-conducted family meeting or patient interview during which unwelcome news is disclosed can be as rewarding an experience to the surgeon as any well-done invasive procedure. Clinical communication is an invasive procedure. Badly conveyed information can have a lasting impact on families, even manifesting itself later as posttraumatic stress disorder in some instances. The operation is a reassuring metaphor for surgeons who may be uneasy when giving bad news, because communication, like surgery, can be learned with good mentoring.

“Exercise sound clinical judgment and skill in the withdrawal and withholding of life support.”

The process of withdrawal or withholding of life support requires a knowledge base and group of skills consisting of prognostication, familiarity with the moral, ethical, and legal basis for withholding or withdrawing medical treatment, communication of anticipated physiologic changes and their implications for palliative interventions, and the ability to intervene promptly and effectively.

When life-prolonging or invasive treatments become doubtful means of achieving a patient’s goals of care, the option of withdrawal or withholding them should be discussed.

Although head and neck surgeons may only rarely be directly involved in this type of discussion, they may serve as consultants to patients in the critical care setting in which this type of decision making is a daily occurrence. For surgeons managing patients with head and neck tumors, an empathic discussion about the normal trajectory of disease untreated or unresponsive to treatment and knowledge of what can be done to mitigate suffering in all its forms as a consequence of this are more reliable ways to preserve a patient’s hope than nondisclosure or detached referral. The support of the consulting surgeon can be invaluable in validating complicated medical decisions, especially those that direct life support to be withheld or withdrawn. Familiarity with the current consensus of medical ethicists and landmark US judicial opinions of the past 3 decades are helpful in discussing the difference between “killing” or “playing God” and allowing natural death. Occasionally, it is helpful to remind surrogates that, from legal and ethical perspectives, the decision to withdraw a treatment is the same as never having started it.

Ventilator support is the most obvious example of the group of treatments collectively known as life support. When tracheostomy for ongoing ventilator support is being considered instead of discontinuation of ventilator support, the surgeon should be aware of the approach and technique of ventilator withdrawal to provide a more complete context for the informed consent process and to better support individuals who make the weighty decision to decline further life support measures.

The decision to withdraw ventilator support can be extremely difficult for surrogates even when the patient may have designated this wish in an advance directive and the surrogate completely agrees. This difficulty is usually due to the following:

• 1.
  

  doubt about the given prognosis for recovery

  
  
• 2.
  

  fear that withdrawal will lead to physical suffering and

  
  
• 3.
  

  fear that making this decision is tantamount to killing the patient. No one is better positioned to authoritatively dispel these doubts and fears than the concerned physician, even if additional reassurance is needed from a professional with sophisticated knowledge of the relevant law and ethics or an individual entrusted with the spiritual care for the individual.

Prognostication, once the most valued skill of medical practitioners, is making a comeback in its clinical importance because of improvements in disease staging, experience with functional assessment scales such as the Karnofsky Performance Scale, and the recognition that accurate prognostication enhances patient autonomy. The rewards of accurate prognostication and the penalty paid for not prognosticating are the main reasons for the reestablishment of its importance in patient goal-oriented care. The functional status of the patient is the single most reliable predictor of prognosis. The Palliative Performance Scale (PPS) is a validated, observer-rated scale that correlates ambulation, activity level, extent of clinical disease, self-care, intake by mouth, and level of consciousness with the Karnofsky scale, which allows correlation of these domains with actual and median survival. The PPS has been validated for cancer patients admitted for inpatient hospice or palliative care. A PPS score of 50% correlates with a patient who mainly sits or lies, requires considerable assistance, and has normal to reduced intake. Confusion not related to a specific central nervous system lesion but stemming from general debility may be evident. At a 50% score, extensive disease is present, and the estimated life expectancy is in the range of 2 to 4 weeks.

Explanation of the physiologic basis for the predictable efficacy of medications used to prevent dyspnea, anxiety, and excessive secretions is one of the most effective means of allaying the fear that the patient will suffer following extubation. It is important to explain that the purpose of medications used in this situation is to relieve symptoms and not hasten demise. It is also important to explain to the family that death does not necessarily immediately follow extubation of patients who are able to breathe independently. This discussion should be documented.

Death can promptly follow cessation of ventilator support because of cardiopulmonary arrest due to hypoxia or hypercarbia from respiratory failure, although the medications given before extubation may appear to be the direct (and intentional) cause of death. Paralytic agents have no place in the process of ventilator support withdrawal because their use would hasten death without any favorable impact on the symptoms associated with withdrawal of ventilator support. The principle of double effect is the ethical framework within which the potential undesired effects of medication (including the hastening of death) are acceptable if the intention of their use is the relief of suffering, although it has been shown that sedative dose increases in the last week and hours of life are not associated with shortened survival when compared with withholding such sedation. The use of deliberate sedation for the relief of intractable symptoms does not shorten survival when these patients are compared with those who do not receive such sedation during the last days of life in hospice care.

Two general approaches to ventilator withdrawal are used—immediate extubation and terminal weaning.

Two approaches to ventilator withdrawal are used when ventilator support remains necessary for survival but is no longer desired as a treatment: 1) Immediate extubation; 2) Terminal weaning.