Challenges and Opportunities to Integrate Palliative Surgery into Palliative Care and Hospice: A Case Report
Surgical continuity of care does not end at hospice referral. There is a strong case for the extension of surgical involvement in the management of patients with progressive, incurable malignancy, with significant potential benefits to patients and their families. Here we report and discuss a challenging patient journey at a rural New Zealand hospital affiliated with a hospice program. This case illustrates the complexities and rewards of achieving a useful and sensible collaboration among various teams to ensure the best possible outcome for surgical patients receiving palliative care.
Keywords:Palliative Surgery; Surgical Palliation; Oncologic Surgery; Palliative Care; Pain; End-of-Life Care; Hospice; Palliative Multi-Disciplinary Collaboration
The best possible outcome for a patient treated palliatively is not easily defined. The meaning may change depending on the patient’s wishes and the medical and surgical treatments available. The American College of Surgeons Surgical Palliative Care Task Force defines palliative surgery as “any invasive procedure used for treatment when the major goal of treatment is relief or the prevention of symptoms to improve quality of life for patients with incurable illness” . Palliative surgery is most likely to be of benefit in scenarios involving pain, gastrointestinal or common bile obstruction, or bleeding. Surgical palliative options include endoscopic stenting, gastrointestinal bypass surgery, ostomy creation, amputation, and debulking. In a comprehensive review by Olsen et al.  on palliative surgery for malignant bowel obstruction from carcinomatosis, surgery alleviated obstructive symptoms in 32% to 100% of patients. However, mortality ranged from 6% to 32%, and reoperations were necessary for 2% to 15%. Potential risks, burdens, and costs of palliative surgery, i.e., mortality and hospitalization, need to be weighed against potential benefits like symptom control and prevention of future complications.
It is crucial to consider the potential morbidity and mortality involved in any palliative procedure being proposed. Other factors that need to be carefully considered include the nature and extent of the underlying disease, any comorbid conditions, non-surgical treatment alternatives, and the patient’s estimated prognosis, personality and expectations, functional status, and support system. Consideration of the likelihood of benefit in terms of alleviating or preventing symptoms or complications as well as the anticipated durability of symptom control is essential .
Another crucial parameter is the profile and surgical experience of the surgeon. Despite potential benefits and advances in surgical palliative care, surgeons might remain reluctant to offer palliative surgery or partner with palliative care specialists [4,5]. The reasons for such disengagement are multifactorial and may include a lack of surgical experience in providing complex palliative oncological interventions, a lack of comfort working within an interdisciplinary team, concern or uncertainty about morbidity and mortality with over-emphasis on risks, and discomfort engaging in scenarios that are non-curative, time-consuming and emotionally charged. Potential barriers for the surgeon may also include discordant cultural, spiritual, or psychological values with a reluctance to openly communicate with patients and families when there is a high degree of ambiguity. Working within defensive health systems that penalize surgeons for undertaking risky but potentially beneficial procedures can be another underlying obstacle. This distortion has been coined “negative defensive medicine” and leads to excessively high incentives for avoiding liability exposure .
Finally, there is a gap in training and guidance for palliative care providers regarding when and how best to partner with surgical colleagues. Patients are typically referred to specialist palliative care and hospice when disease-modifying treatment options are presumably optimized, exhausted, unavailable, or declined. There is little to guide palliative care providers who wish to refer such patients back to specialists like surgeons. It can be challenging for palliative care providers to maintain working relationships with surgical colleagues when contact is sporadic, discussions can be quite technical, and the professional perspectives may seem at first glance to be quite disparate. In the United States, it should be noted that in most circumstances, hospice programs are required to pay for any disease-related treatment a patient receives that is part of the hospice plan of care. Therefore, there may be concerns about the financial implications of involving a surgeon in the treatment plan when the likelihood of success or complications is unclear and financial costs are potentially high. It is also noteworthy that in the US, such palliative surgery would typically be provided late in the patient’s journey because patients are only eligible for hospice care if the prognosis is six months or less [7,8].
New Zealand health care is publicly funded through a single-payer model of care overseen by the Ministry of Health. There are 33 hospice agencies, each partially funded by its applicable regional District Health Board to provide certain contracted specialist palliative care services to eligible patients. Hospice care is provided at no cost to patients and is not billed or reimbursed on a per capita basis. New Zealand hospices pay for treatments provided in inpatient units (if applicable, as not all hospices have inpatient units) but hospices are not expected to finance acute hospital care or community-based treatments or medications. Patients with advanced illness in New Zealand are therefore not faced with a system that dichotomizes palliative care and disease-modifying treatment, but access to specialist services can be challenging - particularly in regional or rural areas - and there is a shortage of qualified palliative and surgical specialists [9,10].
This case report presents the journey of a 57-year-old Caucasian male patient, with an initial diagnosis of low rectal cancer managed with abdominal perineal resection following radiation therapy. Following diagnosis of bilateral lung metastases, the patient declined further palliative chemotherapy. He continued to experience phantom rectum pain despite multiple pharmacologic interventions. The surgery involved extensive adhesiolysis, small and large bowel resection, partial resection of the wall of the ileal conduit, and partial abdominal wall resection with surgical repair of the hernia.
The patient lived another seven months after this procedure.
57-year-old Caucasian male patient RT was treated over six years during a complex and often uncertain palliative journey. Medical history was notable for hypertension, coronary artery disease with left anterior descending artery stent, paroxysmal atrial fibrillation, and obstructive sleep apnoea. He was initially diagnosed with a low rectal cancer managed with abdominal perineal resection following radiation therapy. His rectum perforated intraoperatively and recovery was prolonged due to development of an intra-abdominal abscess. He received delayed postoperative adjuvant chemotherapy. Two years later, computed tomography (CT) showed a metachronous left upper lung metastasis, followed within a few months by the emergence of a local sacral recurrence. He was treated with “neoadjuvant” chemotherapy, radiotherapy to the pelvis, and a subsequent left upper lung lobectomy, all with curative intent. The patient underwent pelvic exenteration at a tertiary hospital that included cystoprostatectomy, S1-S2 sacrectomy with S2 nerve root sacrifice, ileal conduit formation, and vertical abdominis musculocutaneous flap. Post-operative recovery was complicated by abscess formation, urinary retention, and significant neuropathic pain involving the left hip, lower abdomen, bilateral lower extremities, and pelvis. Pain management remained a substantial challenge during his month-long hospitalization, and the patient was ultimately transferred to the hospice inpatient unit (IPU) as a new hospice referral. Over the next few months, opioid and adjuvant medications were modestly tapered, but pain and wound management continued to be on-going issues.
Eight months later, positron emission tomography (PET) demonstrated bilateral lung metastases. The patient declined further palliative chemotherapy. He continued to experience phantom rectum pain despite multiple pharmacological interventions. After modest improvements in pain over the next few weeks with outpatient management, he was admitted to the hospice (IPU) overnight for a 100 mg subcutaneous lidocaine infusion given over 60 minutes. The patient denied a subjective benefit, but Edmonton Symptom Assessment System (ESAS) pain scores and pro re nata (PRN) opioid use declined, sustained release oxycodone and methadone doses were successfully reduced by 50% within 24 hours, and gabapentin was reduced slightly (Table 1).
Approximately six weeks later, RT developed right buttock, leg, and foot pain. There was no sustained symptomatic improvement despite multiple pharmacologic and adjuvant interventions. The patient declined cognitive behavioral therapy, though he did see a pain management specialist at a tertiary hospital on a few occasions. Over the next several months, he developed right gluteal and hamstring muscle wasting and, ultimately, right foot drop. Pelvic magnetic resonance imaging (MRI) revealed right sciatic nerve thickening with edema and diffuse edema of the right quadratus lumborum – all attributed to scar tissue from the previous extensive surgery. A right sciatic nerve block done under ultrasound at a tertiary hospital offered no benefit and the patient declined to pursue further interventional pain management modalities.
Despite frequent discussions about treatment goals and advance care planning with RT stating clearly and consistently that he did not wish to be hospitalized or have further disease-modifying treatments, he presented acutely to the hospital several more times with partial small bowel obstruction, urinary tract infection (UTI) sepsis, pain in his leg or around his ileal conduit, difficulty managing care needs in the home, and delirium. Quality of life and symptom control were severely compromised due in large part to his pain and discomfort caused by the small bowel obstruction and parastomal hernia (Figure 1). RT and his spouse wished to explore operative options if possible, so the hospice team requested input from surgical colleagues.
Though several general surgeons declined to operate at this stage, one surgeon (KR) agreed to proceed after repeated meetings and discussions. This palliative procedure was challenging because previous complex operations resulted in severe adhesions around a parastomal hernia, and there was an unexpected finding of a large metachronous caecal cancer infiltrating into the ileal conduit. The surgery involved extensive adhesiolysis, small and large bowel resection, partial resection of the wall of the ileal conduit, and partial abdominal wall resection with surgical repair of the hernia.
The patient lived another seven months after this procedure.
He presented to the emergency department on a few occasions and was hospitalized seven more times, but the stomal issues were well managed after the final operation. He received five 2-Gy fractions of palliative radiotherapy to the chest for dyspnea related to lung metastases and had three additional hospice IPU admissions, primarily for respite. The patient and his wife ultimately agreed to long-term aged residential care placement due to increased care needs.
He died at the rest home two weeks after his final hospital discharge.
This patient’s journey represents a particularly challenging and complex palliative treatment. There was ambiguity regarding appropriate treatment selection, significant medical, surgical and social obstacles, input from a variety of different specialists and services which made care coordination and shared decision-making challenging, and a lack of evidence-based guidelines.
It is crucial to assess the various players involved in his treatment and the multidisciplinary nature of the patient’s needs. The heterogeneity of the palliative care population requires collaboration across care teams, with a focus on a palliative approach for the majority of people and referral to specialist palliative care services for a smaller number of people based on needs rather than diagnosis or prognosis. .
The palliative care team was led by the Palliative Medicine Specialist – in this case, the Hospice Medical Director (AS). Three surgeons were involved: one performed the primary resection, a second surgeon together with his team of other specialists performed the extensive salvage exenteration, and the surgical oncologist (KR) performed the final complex palliative surgery seven months before death. Additional team members included the General Practitioner (GP), the medical oncologist, hospital-based physicians, pain specialists, the hospice multi-disciplinary team, community-based district nurses and carers, and the rest home personnel.
Only one person can answer the obvious question of whether he received optimal treatment: the patient himself. Even he may be biased since he only knows his journey, and it is difficult to speak to the road not taken. The patient stated several times that he was happy he had the final surgery, but it is difficult to know if the benefits outweighed the burdens from a medical systems standpoint given the patient’s seven-month post-surgical course. The decision-making process in undertaking palliative surgery in the setting of advanced, progressive, and incurable cancer was complex and raised various ethical dilemmas . The palliative surgeon and his team were tasked with providing honest information without unduly destroying hope. The patient’s age influenced the decision – he was relatively young with 63 years at time of death – as did the aggressiveness of the tumor, the extent of disease, and the patient’s complex and refractory symptoms .
In an online survey of 131 members of the American Society of Colon and Rectal Surgeons, the following significant barriers to palliative and end-of-life care were identified: surgeon knowledge and training, communication challenges, difficulties with procrastination, patient and family factors encompassing unrealistic expectations and discordant preferences, and systems issues including culture and lack of documentation and appropriate resources. If a surgeon is willing to undertake a challenging procedure, the risk of complications is difficult to estimate; even a powerful tool like The American College of Surgeons Risk Calculator (ACSRC) in surgical decision-making for palliative procedures for cancer patients overestimates the risk of postoperative complications. It may underestimate length of stay , thus leading to even fewer patients being offered potentially beneficial palliative procedures.
Few studies have prospectively measured outcomes for patients undergoing palliative surgical evaluation for gastrointestinal obstruction. Badgewell at al.  reported on 53 patients with gastric outlet obstruction , small bowel obstruction , and large bowel obstruction  and found that symptom improvement was positively associated with large bowel obstruction, and non-colorectal cancer histology and carcinomatosis were negatively associated with good temporary quality of life. Increased risk of death within 90 days was independently associated with non-colorectal cancer histology, ascites, and nonsurgical treatment.
A Memorial Sloan Kettering Cancer Centre study of 823 patients who underwent palliative operations found that the 30-day mortality rate was 11% [13-15]. The median survival was 194 days; poor performance status, poor nutrition, and no previous history of cancer therapy were associated with shorter survival.
There is little evidence to support whether and how best to integrate palliative care services and principles into general surgery. In 2016, Lilley and colleagues published a systematic review of 25 studies in nine countries to identify, describe, and evaluate the effectiveness of palliative interventions for adult surgical patients . Of note, 19 of these studies (76%) were done at academic hospitals. While there were some positive reports of improved communication, symptom control, and advance care planning, results were inconsistent and many of the studies were small. Only two of the reviewed studies focused primarily on surgical decision-making, though results were encouraging when the “palliative triangle approach” was used . While the 2016 review study uncovered the need for more research into the effects of incorporating palliative care into surgical management of palliative patients, there is even less evidence to guide integrating surgical management into palliative care plans. Guidance for community providers is conspicuously lacking.
Though the literature provides only sparse guidance for management of complex palliative cancer patients, there is general agreement that treatment should be individualized with support from a multidisciplinary team and collaboration with experienced and committed surgeons with a cancer-focused practice . The expectations and goals should be clarified with patients, families, and all team members. Discussions and care plans should be clearly documented with clinical decision-making supported by incorporation of all available clinical information, scores, prognostic models, and calculators. Even with these efforts, there will always be limitations, and an element of uncertainty will remain and needs to be acknowledged [18,19]. This uncertainty will be readily accepted by the patient if the patient-doctor relationship is based on trust and respect, and if we acknowledge that we, as humans, are fallible.
AS:The patient RT understood he was terminally ill, and he and his wife engaged fully in multiple advance care planning (ACP) discussions. He frequently told hospice team members that he did not want to pursue any further disease-modifying interventions or treatments, and that he did not wish to return to the hospital. However, whenever he became unwell, he presented acutely. With multiple health providers involved in his care, this made coordination of services and continuity of care very challenging.
KR:There is always uncertainty in the outcome of a planned surgical procedure. Our patient had already undergone extensive abdominal surgeries before referral. The surgeon often finds himself in a conflict between knowing the surgical risks and the patient’s desire to improve his quality of life and possibly extend life. Once the surgeon has decided to operate, the surrounding logistical capacity and facility shortages, as well as differing opinions of colleagues, might still impede treatment.
AS:RT’s second surgery, i.e., the exenteration, was performed with curative intent but limited expectations at a tertiary hospital. Postoperatively, he was left with persistent pain and disability, but he lived nearly three more years and was able to spend quality time with grandchildren and reconnect with family members. He even constructed his coffin. Despite the logistical challenges of the repeated hospital and hospice admissions, most time was spent at home with his wife. The third surgery done by KR improved his localized pain considerably and made it possible for him to have regular, unimpeded urine output for another seven months, until the end of life.
KR:His symptoms became unmanageable before his last surgery, with severe pain and small bowel obstruction. Surgery was his chance to extend his life and better control his symptoms. After his last surgery, he reassured the team that his quality of life had significantly improved, and his ongoing severe pain had eased. I believe he extended his life by several months with mostly manageable symptoms.
AS:Ultimately, the surgeon made the decision to operate. RT told me on several occasions that his discussions with his last surgeon (KR) were particularly clear and comprehensive. In my conversations with RT about whether to consider surgery, we discussed factors like his performance status, i.e. how well he could mobilize, the amount of help required for various activities of daily living, his expected prognosis, the best, worst, and most likely outcomes in terms of symptom burden and function, and potential burdens of additional surgery. Understandably, he did not want to spend time in hospital or recovering from surgery if it was unlikely to help him feel or function better. Hence, a realistic understanding of what he might expect was critical.
KR:Despite preoperative CT imaging and awareness of the extent of previous surgeries, it was not known how hostile the abdominal cavity would present itself. Even a minimal small bowel injury could lead to severe peritonitis and swift death. However, the inevitability of death due to progressive untreated small bowel obstruction, the strong desire of the patient to proceed with surgery to improve pain control and quality of life, and the visible trust he placed in me as his surgeon were crucial and encouraging factors in the decision to operate.
AS:Many services and providers became involved as the malignancy and complications progressed. The multi-disciplinary hospice team quickly realized that clear and consistent communication amongst all providers was going to be crucial if we hoped to develop, update, and coordinate a plan of care for RT and his family. From the beginning of hospice involvement in this case, we made sure to update the surgical team by including them in letters to the General Practitioner. The surgeon extended the same courtesy to us. We frequently spoke by telephone to discuss options and ensure that information hospice provided to the patient and family was consistent with information provided by the surgical department.
I made a point to check in on RT when he was hospitalized, and there were times that KR or one of his registrars came to the hospice IPU to see the patient.
Over time, I think the trust level between the services evolved to the point that we knew the patient would be well cared for by the surgical team when he presented to the hospital. I want to think that KR and his team felt comfortable turning care back over to hospice and the primary care providers in the community.
KR:The working relationship with Hospice Southland and with AS in particular has always been constructive, collegial, and based on trust and respect. We have treated many patients together over the last several years, and I have been supportive of hospice since I started my surgical training over 30 years ago. This case was, however, a learning experience for all involved, particularly for the younger collaborating surgeons. The team approach in treating this patient together has further strengthened our working relationship.
AS:My suggestion would be to find a surgeon who champions high-quality palliative care and is open to considering operative interventions to prevent or improve symptoms or complications, even in terminally ill patients. I think palliative care providers tend to be comfortable with uncertainty and nuance and pride themselves on taking a thorough history and navigating subtle complexities. Still, in my experience, communication with surgeons is most effective when we are as clear, concise, and direct as possible. My approach is to describe the symptom or issue, summarize the performance status, estimate the prognosis, articulate the goal, and then ask if there is any potential surgical option. As a palliative care doctor I might have some ideas, but surgery is not my area of expertise. A good working relationship with a surgeon allows me to ask questions and explore possibilities. I think it is also imperative that we validate each other when possible and not undermine the work of the other team. I am transparent with patients and families that only the surgeon can make the decision to operate or not based on the presenting problem and training, experience, and skills. I try to make it clear to the patient, family, and surgical team that my team will do our best to advocate for the patient and optimize holistic, non-surgical palliative treatments. Disagreements between teams will arise and can be expected in any productive working relationship, but they should be handled respectfully and collegially – and, ideally, in private. A debrief can be useful as well, and KR and I have had several discussions in the five years we have worked together about what has gone well, what hasn’t gone well, and what we can do better next time.
KR:I agree with these comments and encourage palliative specialists to approach the surgeon of their choice constructively. Ideally, these surgeons should have a surgical oncological background and be senior and experienced in complex cancer surgeries. The surgeon should understand and emphasize the concept of hospice and palliative medicine.
Despite growing recognition of the need for holistic palliative care in cases of incurable malignancy, it is not entirely clear how best to integrate palliative principles into surgical care. Also, the role the surgeon plays in the multi-disciplinary palliative care team is not yet well defined. A productive, collegial, and collaborative working relationship between surgeons and palliative specialists is crucial, particularly in complex and challenging scenarios like the one described in this case report.
The authors wish to acknowledge RT who provided written informed consent for his case to be used.
The authors have no conflicts of interest to disclose.