Living with Head and Neck Cancer and Coping with Dying when Treatments Fail




Palliative care in patients who have head and neck cancer is a complex topic that requires a multifaceted approach. The head and neck surgeon has an important duty to fulfill in managing and following the wishes of the incurable cancer patient and is obligated to direct them to the appropriate services in this challenging time.


It has been suggested that many cancer patients die an undignified death with poorly controlled symptoms. A good death is one that is pain free, peaceful, and dignified, at a place of choosing with the relatives present and without futile heroic interventions. Although the notion of dying at home may be a romantic ideal among health care professionals who aim to provide a good death, as symptoms accelerate in the last 24 to 48 hours, some patients and their families may feel overwhelmed by concerns about symptom control or a dead body at home and therefore prefer a skilled care environment. Previous quality of care studies have identified effective pain and symptom management as the overwhelming priority for patients and their caregivers, closely followed by preservation of the patients’ dignity and hygiene. In a meta-analysis of 52 studies, den Beuken and colleagues found the pooled prevalence of pain to be greater than 50% in all cancer types, with the highest prevalence in patients who had head and neck cancer (70%; 95% CI, 51% to 88%).


In their study, Fried and colleagues provide good insight into the final moments of a patient’s end of life. Pain was a common symptom (84%) and was managed successfully in all patients, with 93% receiving opioids. Management of other symptoms, except neuropsychologic problems, was satisfactory. Sixty-three percent of patients died in the hospital, and only 22% had a relative present at the time of death. Resuscitation status was documented in only 65% of the notes, although none of the patients were admitted to the ICU or underwent resuscitation. Fifty-three percent of patients were admitted as an emergency in the last month of life, and bleeding was the most common cause of admission.


Talking to the family


When Cure is not Possible


Some criteria of when to forgo treatment for advanced cancer are based on poor performance status, age greater than 70 years (for chemotherapy), the previous treatment performed (prior doses of radiation and chemotherapy), the extent of cancer, and expected survival. Widely metastatic disease, including lung and bone metastases, is incurable. Subjecting such a patient to a complex surgery can be a setback in their quality of life without achieving any benefit from a survival standpoint. The patient’s overall health status is important. If they have poor cardiopulmonary function, surgery itself may result in death or stroke. Age is no longer a limitation to providing care in the authors’ practice because the aging population is resulting in healthier octogenarians who can withstand the rigors of cancer therapy. Moreover, prior radiotherapy may preclude additional radiotherapy due to the risk of inducing further cancer. Our treatment paradigm is to preserve the quality of life of individuals to the best possible extent and to carefully weigh the risks and benefits of any therapy (surgical or nonsurgical) against the wishes of the patient and family.


Breaking the News to the Family


Honest and open communication is of utmost importance during the sensitive and life-altering moments people face when confronted with cancer that may ultimately be fatal. Hallenbeck and colleagues noted some key points that should be addressed whenever dealing with such a situation. They stress that, during this confusing time, it is important to ensure that the patient and their family understand the diagnosis and prognosis. Because the treatment has moved from cure to palliation, new goals must be set. As palliative care progresses, the health care team and the family must constantly reassess new symptoms that may occur with changing treatments. Physicians should be willing to discuss the treatment options and be willing to make recommendations. Even in the most dire situations, there is always something that can be done for the patient, such as a change in pain medication or an exercise routine. Most importantly, one must never abandon a patient in this greatest time of need.


Cultural sensitivity must be taken into account. In several cultures, including those from South Asia, the diagnosis of cancer itself is a death sentence. In such a situation family involvement is an excellent intermediary to help the patient achieve the best treatment and have realistic goals.


In the authors’ practice, a team approach is used to understand the concerns of the patient and family. Sometimes the patient may not be willing to discuss something that they consider inconsequential for the physician but are comfortable discussing with a nurse or medical assistant. At a minimum, a successful head and neck cancer practice must have a cancer nurse, a cancer nurse practitioner, and a cancer patient navigator available. This staffing provides for several layers of social support, medical support, and guidance for the many tests or appointments a patient may have to deal with. Such a service greatly enhances patient and family satisfaction with the care they receive.




Palliative measures


Chemoradiation Therapy


The decision of when to pursue curative versus palliative treatment with chemoradiation is often a difficult choice and requires open communication with the patient and family. When the decision is made for palliative treatment, the goal must be to provide optimal relief while minimizing the side effects of treatment and remembering that cure is not the goal. A study by Graf and colleagues sought to determine whether treating with concomitant radiation and chemotherapy would be superior to the traditional method of sequential treatment with induction chemotherapy followed by radiation in inoperable head and neck cancers. The sequential protocol started with two courses of neoadjuvant chemotherapy, cisplatin and 5-fluorouracil, followed by a course of radiotherapy using conventional fractionation up to 70 Gy. The concomitant protocol used two courses of 5-fluorouracil plus mitomycin along with a course of radiotherapy up to 30 Gy in conventional fractionation, which was followed by a hyperfractionated course up to 72 Gy. There were significant increases in response rate and local control along with a trend toward higher disease-specific and overall survival rates after 5 years in the group that received concomitant radiation and chemotherapy followed by radiation. Late toxicity was found to be similar in both groups. A study by Yogi and Singh of 100 patients showed improved survival and symptom relief when induction therapy was used before combined chemoradiotherapy as opposed to induction chemotherapy and radiation. In a study by Mohanti and colleagues, 505 patients with nonmetastatic stage IV head and neck cancer received 20 Gy in five fractions over 1 week, along with medication for symptom relief. Symptom relief was achieved for greater than 50% of the patients. The following responses rates were observed: relief of pain, 57%; dysphagia, 53%; hoarseness, 57%; cough, 59%; and otalgia, 47%. The overall survival ranged from 34 to 2065 days. Teymoortash and colleagues performed a study in which they intra-arterially injected cisplatin into unresectable head and neck tumors. They reported a decrease in malodor, pain, and tumor bleeding. This method may be an approach to consider when palliatively treating such patients.


Debulking


The major morbidity from advanced head and neck cancer is airway obstruction, dysphagia, pain, and bleeding. Forbes stated that the goal of palliative surgery is to improve the patient’s quality of life by reducing symptoms without the additive effect of surgical complications. He made several observations concerning the role of surgery in palliation and the principles of preoperative care, operation for advanced cancer, and postoperative care ( Box 1 ).



Box 1





  • The role of surgery in palliation



    • 1.

      Cancer patients are surgical patients first.


    • 2.

      Surgery is directed at the consequences of the tumor.


    • 3.

      Integrate surgery into specific treatment and supportive care.


    • 4.

      Avoid unreasonable delay of palliative surgery.


    • 5.

      Surgical problems may have a benign cause; obtain histology.




  • Principles of preoperative care



    • 1.

      Perform consultations and provide explanations.


    • 2.

      Plan for immediate and long-term care.




  • Principles of operating for advanced cancer


  • 1.

    Determine the site of incision.


  • 2.

    Each patient must undergo the procedure that is optimal for him or her.



  • Principles of postoperative care


  • 1.

    Optimize recovery by avoiding complications.


  • 2.

    Obtain an early diagnosis and perform aggressive management of complications.



Forbes’ observations concerning the goals of palliative surgery


Cancer of the head and neck often necessitates adjunctive treatments to provide patients with adequate voice use or to allow them to swallow. Tumor debulking can be a useful adjunct to palliation or can prepare patients for chemotherapy, radiotherapy, or definite surgery. There are many advantages to the laser as a debulking agent. It is quick, repeatable, and coagulates tissue, and it is atraumatic, precise, and allows for sterilization and prompt healing. Laccourreye and colleagues in a 10-year study of 42 patients used the CO 2 laser to debulk endolaryngeal cancers. They were able to achieve a 95% success rate in patients awaiting definitive treatment for their disease and an 87.5% success rate in patients who were undergoing palliation. Recently, Phelan and colleagues reported successful debulking with the use of microdebriders to reestablish airways in patients with obstructing laryngeal tumors. Paleri and colleagues reviewed the records of 50 patients who underwent laser debulking for airway obstruction that was caused by laryngeal or hypopharyngeal malignancies, with 14 of these patients only receiving palliative measures. For their patient population, the mean number of procedures was 1.9, with 1% to 6.91% of patients avoiding a tracheostomy. The avoidance of tracheostomy in these patients is of great benefit, because there has been a reported risk of 8% to 41% for tumor seeding of the peristomal wound with resultant recurrence after laryngectomy.


Tumor debulking provides an avenue to improve the airway and possibly avoid a tracheotomy, to reduce pain by reducing tumor bulk, to reduce the chance of a major bleed, and to possibly remove an anatomic hindrance to successful swallowing (although most patients at this stage have had surgery or chemoradiation or both that have effected swallowing at baseline). Tumor debulking has the potential to improve the overall quality of life in this patient population.


Managing the External Fungating Lesion


Patients often suffer great psychosocial and physical distress due to the unremitting and debilitating process of a fungating lesion. Patients may see their bodies morphologically changed, affecting their confidence and willingness to interact socially. Additionally, they often exude a malodor that impacts their interactions. Grocott has suggested three tools to aid in malodor: systemic antibiotics, topical metronidazole, and charcoal dressings.


The care of wounds is often a complicated process. When possible, a consultation with wound care teams must be immediately sought. Only wounds that are producing excessive exudates, purulence, or serous fluids require cleansing. This cleansing can be adequately done with showering, but a sterile technique must be used if there is deep bone involvement. Dressings should be able to maintain moisture to avoid adherence to the wound and at the same time be able to vent excess fluid. Debridement of necrotic tissue may provide the benefits of reducing infection, exudates, and malodor. Because sharp debridement carries the risk of hemorrhage, for most patients the debridement provided by moist dressings will be adequate. Nutritional support should be provided if high amounts of exudates are noted, because exudates are protein rich. Pain control from the tumor should be frequently assessed and treated. Proper and early referrals should be made to the appropriate team members.




Palliative measures


Chemoradiation Therapy


The decision of when to pursue curative versus palliative treatment with chemoradiation is often a difficult choice and requires open communication with the patient and family. When the decision is made for palliative treatment, the goal must be to provide optimal relief while minimizing the side effects of treatment and remembering that cure is not the goal. A study by Graf and colleagues sought to determine whether treating with concomitant radiation and chemotherapy would be superior to the traditional method of sequential treatment with induction chemotherapy followed by radiation in inoperable head and neck cancers. The sequential protocol started with two courses of neoadjuvant chemotherapy, cisplatin and 5-fluorouracil, followed by a course of radiotherapy using conventional fractionation up to 70 Gy. The concomitant protocol used two courses of 5-fluorouracil plus mitomycin along with a course of radiotherapy up to 30 Gy in conventional fractionation, which was followed by a hyperfractionated course up to 72 Gy. There were significant increases in response rate and local control along with a trend toward higher disease-specific and overall survival rates after 5 years in the group that received concomitant radiation and chemotherapy followed by radiation. Late toxicity was found to be similar in both groups. A study by Yogi and Singh of 100 patients showed improved survival and symptom relief when induction therapy was used before combined chemoradiotherapy as opposed to induction chemotherapy and radiation. In a study by Mohanti and colleagues, 505 patients with nonmetastatic stage IV head and neck cancer received 20 Gy in five fractions over 1 week, along with medication for symptom relief. Symptom relief was achieved for greater than 50% of the patients. The following responses rates were observed: relief of pain, 57%; dysphagia, 53%; hoarseness, 57%; cough, 59%; and otalgia, 47%. The overall survival ranged from 34 to 2065 days. Teymoortash and colleagues performed a study in which they intra-arterially injected cisplatin into unresectable head and neck tumors. They reported a decrease in malodor, pain, and tumor bleeding. This method may be an approach to consider when palliatively treating such patients.


Debulking


The major morbidity from advanced head and neck cancer is airway obstruction, dysphagia, pain, and bleeding. Forbes stated that the goal of palliative surgery is to improve the patient’s quality of life by reducing symptoms without the additive effect of surgical complications. He made several observations concerning the role of surgery in palliation and the principles of preoperative care, operation for advanced cancer, and postoperative care ( Box 1 ).



Box 1





  • The role of surgery in palliation



    • 1.

      Cancer patients are surgical patients first.


    • 2.

      Surgery is directed at the consequences of the tumor.


    • 3.

      Integrate surgery into specific treatment and supportive care.


    • 4.

      Avoid unreasonable delay of palliative surgery.


    • 5.

      Surgical problems may have a benign cause; obtain histology.




  • Principles of preoperative care



    • 1.

      Perform consultations and provide explanations.


    • 2.

      Plan for immediate and long-term care.




  • Principles of operating for advanced cancer


  • 1.

    Determine the site of incision.


  • 2.

    Each patient must undergo the procedure that is optimal for him or her.



  • Principles of postoperative care


  • 1.

    Optimize recovery by avoiding complications.


  • 2.

    Obtain an early diagnosis and perform aggressive management of complications.



Forbes’ observations concerning the goals of palliative surgery


Cancer of the head and neck often necessitates adjunctive treatments to provide patients with adequate voice use or to allow them to swallow. Tumor debulking can be a useful adjunct to palliation or can prepare patients for chemotherapy, radiotherapy, or definite surgery. There are many advantages to the laser as a debulking agent. It is quick, repeatable, and coagulates tissue, and it is atraumatic, precise, and allows for sterilization and prompt healing. Laccourreye and colleagues in a 10-year study of 42 patients used the CO 2 laser to debulk endolaryngeal cancers. They were able to achieve a 95% success rate in patients awaiting definitive treatment for their disease and an 87.5% success rate in patients who were undergoing palliation. Recently, Phelan and colleagues reported successful debulking with the use of microdebriders to reestablish airways in patients with obstructing laryngeal tumors. Paleri and colleagues reviewed the records of 50 patients who underwent laser debulking for airway obstruction that was caused by laryngeal or hypopharyngeal malignancies, with 14 of these patients only receiving palliative measures. For their patient population, the mean number of procedures was 1.9, with 1% to 6.91% of patients avoiding a tracheostomy. The avoidance of tracheostomy in these patients is of great benefit, because there has been a reported risk of 8% to 41% for tumor seeding of the peristomal wound with resultant recurrence after laryngectomy.


Tumor debulking provides an avenue to improve the airway and possibly avoid a tracheotomy, to reduce pain by reducing tumor bulk, to reduce the chance of a major bleed, and to possibly remove an anatomic hindrance to successful swallowing (although most patients at this stage have had surgery or chemoradiation or both that have effected swallowing at baseline). Tumor debulking has the potential to improve the overall quality of life in this patient population.


Managing the External Fungating Lesion


Patients often suffer great psychosocial and physical distress due to the unremitting and debilitating process of a fungating lesion. Patients may see their bodies morphologically changed, affecting their confidence and willingness to interact socially. Additionally, they often exude a malodor that impacts their interactions. Grocott has suggested three tools to aid in malodor: systemic antibiotics, topical metronidazole, and charcoal dressings.


The care of wounds is often a complicated process. When possible, a consultation with wound care teams must be immediately sought. Only wounds that are producing excessive exudates, purulence, or serous fluids require cleansing. This cleansing can be adequately done with showering, but a sterile technique must be used if there is deep bone involvement. Dressings should be able to maintain moisture to avoid adherence to the wound and at the same time be able to vent excess fluid. Debridement of necrotic tissue may provide the benefits of reducing infection, exudates, and malodor. Because sharp debridement carries the risk of hemorrhage, for most patients the debridement provided by moist dressings will be adequate. Nutritional support should be provided if high amounts of exudates are noted, because exudates are protein rich. Pain control from the tumor should be frequently assessed and treated. Proper and early referrals should be made to the appropriate team members.




Complications from palliative measures


The Effects of Altered Anatomy


Our physical appearance places a large role in our everyday life and is often taken for granted. It is important for self-confidence, our interactions with people, and our ability to effectively communicate. Patients suffer greatly when their physical appearance becomes altered in the course of surgical treatment. No two patients have the same scars, heal the same, or have the same perceptions about their appearance. Two studies have made some strong points on this topic.


Rumsey and colleagues studied 220 outpatients who were receiving treatment for burns, skin conditions, or head and neck cancer, or seeking plastic surgery for other appearance concerns. The study revealed that these patients displayed raised levels of anxiety, depression, social anxiety, social avoidance, and a reduced quality of life. Levels of psychosocial distress were not well correlated with the severity of disfigurement; therefore, individual assessment is crucial. Katz and colleagues studied 82 ambulatory head and neck cancer patients who were assessed at least 6 months after treatment and disease free. They found a discrepancy between the way men and women felt about the changes to their body. On the Atkinson Life Happiness Rating scale, the mean was 7.78 (standard deviation [SD], 1.93) on a scale from 1 to 11, which indicates an overall satisfaction with life. Men reported a significantly higher mean life happiness (8.11; SD, 2.01) when compared with women (7.04; SD, 1.54), ( t [80] = 2.36, P <.02). The researchers also reported increased depressive symptoms for women and for those who were more disfigured. Social support was not related to depressive symptom levels.


In the authors’ surgical practice, the early recognition of these symptoms is key via a multidisciplinary approach and multiple tiers of care providers. We provide early referral to psychology and have established a head and neck cancer support group to help patients and their families cope with the situation.


Speech in the Alaryngeal Patient


The reader is referred to the article by Grillone and Langmore, elsewhere in this issue for more information on this topic.


Swallowing


The reader is referred to the article by Kozak and Grundfast, elsewhere in this issue for more information on this topic.


Exposed Carotid Artery in a Radiated Field


The presence of an exposed carotid artery in the radiated field is a challenging situation with a high morbidity and mortality. Such patients are at risk of carotid blowout with resultant exsanguination. The patient needs to be transferred to an ICU setting for close neurovascular checks. The patient with such a condition should be clearly explained the risks ahead, and an understanding and documentation of their code status is essential. If the patient is full code, an emergent coverage of the defect with a muscle flap is essential. The pectoralis major myocutaneous flap or lower island trapezius muscle flap are good choices for thick muscle coverage for the carotid artery. During the time that the patient is waiting for surgery, the carotid needs to be kept wet with normal saline wet-to-wet dressing changes. If the patient has a do not resuscitate order or declines surgery, palliative saline dressing changes are needed with the understanding that they will be associated with carotid blowout and resultant death.


Role of Regional or Microvascular Free Tissue Transplant Reconstruction in the Nonhealing Tissue Bed


Major reconstruction of treatment-related defects is often part of head and neck cancer care. Reconstruction is often complicated by concomitant treatments such as radiation. The risk of complications in a primarily radiated field can be as high as 30%. Sandel and Davidson reviewed the records of 14 patients who had 16 free flaps to assess the success of free flaps for radiation-induced damage which did not heal after 3 months. Twelve patients had osteoradionecrosis, nine had mandible involvement, and three had scalp involvement. Osteoradionecrosis can be a devastating late consequence of radiation that can be hard to treat, with morbidity ranging from pain, infection, and fistula formation to dysphagia. Free tissue transplants had a good healing rate in a radiated bed. There was a slightly higher rate of skin paddle breakdown and fistula formation in the radionecrosis group. The findings suggested that, overall, advanced stage III radionecrosis of the bone or soft tissue does just as well with free tissue transplant reconstruction as other diseases, and vascular anastomosis may be more successful if performed outside the radiated field, although the patient numbers were not large enough to statistically prove this.


Mucositis in the Patient Undergoing Radiotherapy


Oral mucositis is a painful inflammatory process characterized by ulcers on oral mucosa covered by a pseudomembrane and is a common consequence of radiation and chemotherapy. Oral mucositis results from two major mechanisms: direct toxicity to the oral mucosa and myelosuppression due to the treatment. Its pathophysiology is composed of four interdependent phases: an initial inflammatory/vascular phase, an epithelial phase, an ulcerative/bacteriologic phase, and a healing phase. It is considered a potential source of life-threatening infection and often is a dose-limiting factor in anticancer therapy. Breaks in treatment that are often caused by this complication can lead to tumor repopulation and have negative effects on chemo- and radiotherapy. Patients with oral mucositis are significantly more likely to have severe pain and a weight loss of greater than 5% when compared with similar patients and require $1700 to $6000 more for treatment. Currently, the care of patients with mucositis is essentially palliative, relying on oral hygiene, a nonirritating diet, and oral care products including topical mouth rinses, anesthetics, and the use of systemic opioid analgesics.


Aziz and Ebenfelt in a study of 10 patients discovered that 8 of the patients had increased numbers of granulocytes without macrophage activity in their secretions after 2 weeks of radiotherapy. All of these patients developed mucositis. They suggested that the granulocytes in the secretion may have a role in the development of mucositis during radiotherapy. This connection is supported by a study by Patnie and colleagues who observed a decreased severity of mucositis and dysphagia in patients treated with granulocyte macrophage-colony stimulating factor. Other treatment options include amifostine, which has been found to reduce the severity of acute mucositis and acute and late xerostomia in patients who have head and neck cancer. Initial reports of the use of the immunokine WF10 suggest that it appears to reduce the severity of oropharyngeal complications such as mucositis and dysphagia associated with standard radiation and chemotherapy.


Xerostomia


Xerostomia is a subjective feeling of dry mouth, usually due to a decrease in saliva production. It is often a permanent complication of head and neck cancer treatment with radiotherapy and chemotherapy. It occurs in nearly all patients undergoing radiotherapy and directly affects quality of life in the long run. Saliva has many important roles that are often taken for granted, such as aiding in speech and swallowing and providing antimicrobial protection. In a study of 16 patients with advanced malignancies, symptomatic xerostomia, and its associated symptoms, the condition had a considerable negative global impact, resulting in shame, anxiety, disappointments, and verbal communication difficulties.


Jellema and colleagues evaluated patients with stage I to IV disease without distant metastases and found a significant association of radiation-induced xerostomia and overall quality of life. In terms of gender, this process had a greater impact on women, and there was a marked worsening of quality of life with increasing xerostomia. The impact of xerostomia on quality of life increased the longer the patient sustained the disease. In addition to the discomfort, these patients are also more prone to oral diseases such as candidiasis.


Treatment consists of three pathways: (1) increasing saliva production by mechanical (eg, chewing gum), gustatory (eg, vitamin C tablets), or pharmacologic stimulation (eg, pilocarpine); (2) using saliva substitutes; and (3) improving active mouth care. A soft diet must be advised; hard and dry food, tobacco, and alcoholic beverages should be avoided. A new treatment modality that has shown promising results is transcutaneous electric nerve stimulation. This new modality has been successful in increasing parotid gland salivary flow in two thirds of healthy adult subjects.


Prevention is better than cure, and some promising new options can be considered before treatment of this patient population. Data in a rat model suggest that pretreatment with cevimeline, a muscarinic receptor agonist, prevents radiation-induced xerostomia and the radiation-induced decrease in expression of AQP5 in submandibular glands. A potential surgical option is the Seikaly-Jha procedure, which is a method of preserving a single submandibular gland by surgically transferring it to the submental space before radiotherapy. Improved radiation techniques such as intensity-modulated radiotherapy and tomotherapy allow more selective delivery of radiation to defined targets in the head and neck, preserving normal tissue and the salivary glands.

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Apr 2, 2017 | Posted by in OTOLARYNGOLOGY | Comments Off on Living with Head and Neck Cancer and Coping with Dying when Treatments Fail

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