Referring a Patient and Family to High-Quality Palliative Care at the Close of Life: Title and subTitle Break“We Met a New Personality . . . With This Level of Compassion and Empathy”

Mr K is a 49-year-old man with metastatic spindle cell cancer who was admitted directly to the palliative care service (PCS) of a large metropolitan hospital, for management of intractable pain, following a week of telephone consultation between his primary care physician and the PCS. The PCS provides more than 400 consultations per year in a 1900-bed hospital that is part of a health care system that includes both home care and hospice programs. The PCS team consisted of 3 physicians, a clinical nurse specialist, a social worker, and a chaplain.

The patient's primary care physician had tried treating Mr K's pain with long-acting opioids (oxycodone long-acting 340 mg twice daily) and dexamethasone but without success. The patient had a complex history of back problems dating to adolescence, with a diagnosis of spindle cell sarcoma in the fall of 2006. The tumor had progressed to involve the T2, T3, and T4 vertebrae. Because of instability, one of the patient's ribs was harvested and wrapped in a titanium cage in an attempt to stabilize his spine. However, following surgery, the harvested rib slipped, requiring that the operation be redone 4 days later. He was then referred to a quaternary care facility for 16 rounds of proton beam therapy, returning home in July 2007. Since then, his pain had been escalating and magnetic resonance imaging (MRI) showed malignant involvement of the T1, T5, T7, and T9 levels. Despite long-acting opioids and dexamethasone, he now rated his pain as “10 out of 10” and at times wondered how he could go on and bear the pain.

Mr K is a retired engineer, receiving disability since the 1990s. His wife is a psychiatric nurse and acupuncture practitioner. Mr and Mrs K have 3 sons, aged 18, 13, and 12 years. Mr K is Lutheran and his beliefs provide him solace.

Upon admission, the palliative care physician, Dr G, noted that Mr K and his wife requested visits from both the social worker and chaplain. Mr K's goals were improvement in pain and longevity, although he acknowledged his terminal illness. Mr K expressed his desire for “full code” status, although he understood the concern that chest compressions could result in spinal paralysis. On admission, Mr K shared his concern that he be present at his middle son's Eagle Scout induction the following weekend.

Within a short time, the PCS team addressed a number of important family issues. First, Dr G outlined a care plan and instilled a sense of hope regarding pain management options. A temporizing pain regimen of methadone, ketamine, and a single intravenous dose of zoledronic acid was instituted and provided relief. An interventional radiology procedure to place a catheter for intrathecal opioid administration was arranged for the Monday following the Eagle Scout ceremony. Second, noting the previous fragmentation of Mr K's medical care, Dr G arranged for him to see a sarcoma specialist to establish a realistic prognosis. Third, Dr K's care plan was shaped by both social work and spiritual staff. Mrs K had important concerns about how best to prepare their 3 sons for the impending death of their father. Finding appropriate resources was challenging because Mrs K came from a small community and she felt it was important to find resource personnel with whom she did not have collegial or professional relationships. The PCS chaplain, Mr V, who was a Lutheran pastor, provided affirmation and supportive listening for Mr K, who was accepting but at times fearful of dying. In addition, Dr G arranged for Mr K to be seen by the psychiatry service, which recommended olanzapine as an adjunctive agent for pain; the psychology service, which made further recommendations for coping with pain; and the medical orthotics service, which decided to cast a thoracic vest to support and protect his spinal cord.

Mr K was discharged to attend his son's ceremony and readmitted the following week for intrathecal catheter placement. At that time, his protective vest was ready. Ms C, the social worker, provided a list of local resources for the family. Following successful start of intrathecal opioid therapy, Mr K was discharged with outpatient follow-up by the PCS and pain management service.

In September 2007, a Perspectives editor interviewed Mr K, Mrs K, and members of the palliative care team, including Ms C, the social worker, Dr G, the PCS physician, and Mr V, a Lutheran pastor.

MRS K: It's nice to have a compassionate individual involved in giving care. We met a new personality in medicine that we have never met before, with this level of compassion and empathy.

DR G, THE PCS PHYSICIAN: I think the passion for anyone who works in this field is trying to get down to what really is important for this person's life and does this make sense for them. . . . [W]e're happy to support that.

The past decade has seen rapid growth of both hospice and hospital-based palliative care programs in the United States.^{1 - 2} The first US hospice program started in 1974; now, the National Hospice and Palliative Care Organization estimates that there are more than 4700 programs. According to the American Hospital Association's annual survey, in 2007 there were about 1400 hospital-based palliative care teams. More than 75% of hospitals with at least 250 beds have a hospital-based palliative care program and nearly 100% of all Veterans Administration hospitals have a program.³ The primary care physician caring for Mr K was faced with 4 questions: (1) Should I refer Mr K to a hospital-based palliative care team or to a hospice? (2) If the patient is referred to a hospital-based palliative care service, what should I, as the primary care physician, expect in terms of services for this seriously ill person and his family? (3) When should I refer a patient in a hospital-based palliative care service to a hospice? and (4) How do I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care?

Mr K's primary care physician was faced with an array of referral options, including hospice and hospital-based palliative care services. The Table provides key differences between hospice and hospital-based palliative care services. In short, all care provided by hospices is palliative; however, not all palliative care is provided by hospices. The World Health Organization (WHO) defines palliative care as

An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.⁵

Hospice, as defined by the Medicare Hospice Benefit, is a health care delivery system under which the patient opts out of curative treatments for the terminal illness. Under the Medicare Hospice Benefit, hospices provide a package of services that include physician, nursing, social work, home health aide, volunteer, physical therapy, occupational therapy, speech therapy, counseling, dietary, and spiritual professionals; medications related to the terminal illness; medical supplies and equipment; short general inpatient and respite care; 12 months of bereavement follow-up; and any other services reasonable and necessary for palliation of the terminal illness.⁶ Each hospice determines coverage policies for expensive treatments, such as the intrathecal pump that Mr K received. Hospices can admit patients receiving intrathecal opioid therapy. However, the $10 000 (or more) cost of implanting an intrathecal pump is prohibitively expensive for a hospice being paid a routine home care daily rate of approximately $140. Therefore, in our experience, complex patients often receive these interventions before they are referred to hospice. The hospice program can monitor the pump therapy and ensure that the patient's pain is effectively managed and that infection is prevented. Given that hospice coverage polices for expensive treatments vary, primary care physicians should ask the local hospice about its coverage policies to assist them in determining when a patient receiving a given treatment is more appropriate for hospice or hospital-based palliative care services, if available. As in this case, there may be opportunities for both types of services to provide care at appropriate points. For patients not using the Medicare Hospice Benefit, eg, those with private insurance, the eligibility and type of palliative services provided vary by the insurer and over time. Full discussion of these benefits is beyond the scope of this article.

Hospital-based palliative care programs can provide any or all of the palliative services mentioned above and vary greatly from program to program. A hospital-based palliative care program could range from having 1 specially trained nurse visiting patients throughout a facility to including a complete interdisciplinary team with a dedicated inpatient unit, home care program, and outpatient program. Presently, hospital-based palliative care programs may offer fewer volunteer, spiritual, and bereavement services than do hospice programs. Hospital-based palliative care programs are funded from reimbursement through existing payment channels, including billing through Current Procedural Terminology (CPT) codes and hospital diagnosis related groups (DRGs) and also can be supported through the hospital's core facility budget. Many hospitals support their palliative care programs to reduce the length and cost of intensive care unit and inpatient stays.⁷

Hospice and palliative care physicians have had the opportunity to be certified by the American Board of Hospice and Palliative Medicine and now if their specialty organizations participate, they can achieve subspecialization credentials in hospice and palliative medicine that is recognized by the American Board of Medical Specialties. Being certified in hospice and palliative medicine is one indication that physicians working in a hospice or palliative care program have the requisite skills to provide competent palliative care.

Under the Medicare Hospice Benefit, a primary care physician and the hospice medical director must certify that the patient has an expected prognosis of 6 months or less if the patient's disease trajectory follows its normal course. Quiz Ref IDPersons dying from cancer have a more predictable disease trajectory with progression of disease, gradual functional decline, and increased time in bed, providing evidence that the patient is in his/her last months of life. For persons dying of congestive heart failure, chronic obstructive pulmonary disease, and dementia, prognostication can be more difficult. In these cases with less predictable prognoses, palliative care physicians with hospital-based palliative care services or local hospices can help estimate survival time. In addition to their experience of having seen many dying patients, their new perspective can be useful because prognostic accuracy declines the longer the physician has known the patient.⁸

Quiz Ref IDThe central difference between hospice and hospital-based palliative care programs is that the latter can admit and serve patients who are still receiving curative therapies. There is no specific prognostic requirement for patients referred to a hospital-based palliative care service. When considering whether to refer a patient to hospice or to a palliative care service, the primary care physician must weigh numerous factors. A first step is to understand where the patient and family are in their own journey with the illness. Have they reached the critical turning point to change the major focus of care from life extension to comfort measures? The primary care physician should actively listen to the patient to understand how this life-threatening illness is affecting quality of life, and determine the patient's wishes and goals concerning continued curative treatment. Often, the primary care physician needs to sensitively educate the patient about prognosis, treatment options, and when appropriate, availability of hospital-based palliative care or hospice services. Many patients make decisions about whether to continue or discontinue curative therapy with the reactions of their family in mind. Patients and families may maintain a “conspiracy of silence” about the seriousness of the patient's condition. Some patient-family units may need permission from the physician (perhaps using a “hope for the best, but prepare for the worst” approach) to consider a less aggressive approach. Previous Perspectives articles have explored how to approach these difficult conversations, including the opportunities to find growth and transcendence at the end of life⁸ and how to initiate conversations at the end of life.⁹ The theory and practice of conversations with those facing the end of life has also been reviewed.¹⁰

To refer patients appropriately, a primary care physician must learn what resources are available for patients in their community. With the exception of a small number of rural areas, all regions in the United States have access to hospice services,¹¹ whereas hospital-based palliative care services are relatively new and may not be available in some urban and many rural areas. In addition, each type of program has important strengths and weaknesses; thus, the primary care physician must decide which service best fits the patient and family's needs at a given time. As this case illustrates, physicians practicing in rural areas without requisite resources may need to refer their complex patients to tertiary referral centers.

What should primary care or specialist physicians caring for seriously ill patients and their families expect from a palliative care service? What defines high-quality palliative care services? Over the past 3 decades, a consensus definition was developed with input from experts, consumers, legislators, and judges and was ratified into A National Framework and Preferred Practices for Palliative and Hospice Care of the National Quality Forum.¹² Key components are holistic care provided by interdisciplinary teams that attend to the patients' desired physical comfort and emotional support through evidence-based practice, the promotion of shared decision making, attention to the needs of the family for information and skills in participating in care for the patient, provision of bereavement services prior to and after the patient's death, and coordination of care across settings of care and the patient's disease trajectory. Most importantly, a palliative care service should be patient- and family-centered. The modern hospice movement's founder, Dame Cicely Saunders, eloquently observed, “We never lost sight of the values that were so important to David [David Tasma, founding donor of St Christopher's Hospice]: ‘commitment to openness, openness to challenge, and the absolute priority of patients' own views on what they need.’”¹³

Box 1 outlines the expectations a primary care physician may have of a hospital-based palliative care service, based on review of existing guidelines, conceptual models of the quality of care, and the National Quality Forum framework.¹² The central structural element is an interdisciplinary team, including physician, nurse, social worker, pharmacist, spiritual counselor, and allied health professionals who are available 24 hours a day, 7 days a week. Having physicians and nurses who are certified in palliative care is an important consideration to judge the quality of a hospital-based palliative care service. Palliative care programs must be open to critical self-reflection through audits of care and application of continuous quality improvement.

Adapted from the National Consensus Project,¹⁴ National Quality Forum, A National Framework and Preferred Practices for Palliative and Hospice Care Quality¹² , National Hospice Foundation guide on choosing a hospice program,¹⁵ and Teno and colleagues.¹⁶

Even at this early stage in the evolution of quality measurement, substantial agreement exists on the key domains (the eTable summarizes a literature review of key goals and palliative care in a structure-process-outcome framework). These domains were validated¹⁷ through surveys of health care professionals, seriously ill patients, and family members, after analysis and synthesis of a systematic review,¹⁶ the National Quality Forum framework,¹² focus groups,¹⁶ and in-depth interviews.¹⁸ Nearly 70% of reviewed citations agreed on the importance of the domains of symptom palliation, emotional support, promoting shared decision making and advance care planning, meeting the needs of patients and those who care for them, addressing grief and spirituality, and coordination of care.

A useful mnemonic is the 3 Cs: high-quality care is competent, compassionate, and coordinated. Competent care involves an interdisciplinary team that provides evidence-based symptom palliation and psychological support in the key domains of physical comfort, psychological support, social support, bereavement services, and life closure including spirituality and transcendence. Compassionate care treats the patient and family with respect, honors cultural traditions, and provides holistic care. Finally, the care is coordinated and seamless the across the setting of care and the disease trajectory. Lack of care coordination is common and can result in the patient being subjected to unnecessary tests, medical errors, and lack of continuity of the care plan.¹⁹ The hospital-based palliative care team to which Mr K was referred did an admirable job in fulfilling each of the 3 Cs, as discussed below.

MRS K: One of the big questions is: have you tried it all? Is there something you missed? Dr G . . . helped us figure that out.

DR G: I think some of the most important work and growth that happens at the end of life can't happen if there are uncontrolled symptoms . . . [Then] part of the work is finding meaning in terms of one's life journey.

In a relatively short period, the PCS met and understood the patient's medical history and his family's needs and expectations and had formulated an individualized care plan. As with all seriously ill patients, whether cared for by a hospital-based PCS or hospice, a key question for this dying man and his family was whether all treatment options for his pain and his cancer had been exhausted? For his pain, the hospital-based palliative care team quickly synthesized the options, temporizing with an oral regimen to allow Mr K to be present at an important family event, and then providing state-of-the-art management with an intrathecal opioid pump,²⁰ thus minimizing the adverse effects of high-dose opioids and other medications that he would otherwise have required. For his cancer, Dr G recognized the need to involve a sarcoma expert to provide important prognostic information and to ensure that Mr K was informed of any remaining treatment options.

MR V, THECHAPLAIN: I really feel that if someone is able to share his story and reflect . . . then that person will find within the resources and the way to go himself. This patient really only needed affirmation . . . 

MS C, THESOCIALWORKER: The wife was concerned for herself and her sons' adjustment once he did die . . . One complicating factor, given her profession as a psychiatric nurse, [was] whom we referred her to.

The hospital-based palliative care team exemplified a second C, compassionate and holistic care. Mrs. K's words attest to the compassion and empathy of Dr G. But each member of the interdisciplinary team understood the expectations and tailored interventions and referrals for both husband and wife.

MRS K: The social worker checked to make sure that we could get follow-up care, support or counseling, in our area. She called the hospice people in our area to make sure they were going to be available to us.

The third C is coordination of care. Too often, seriously ill people feel as though they are lost among myriad specialists focused on body organs, with no physician specifically charged with providing critical assistance and ensuring continuity and coordination of the plan of care at all stages of the disease trajectory.¹⁶ Seriously ill patients and their families need to know whom they can call for help, what they should monitor, and when they should call. Clearly, Mrs K believed there was an orchestrated and clear plan of follow-up.

With a change in Mr K's condition, a referral to hospice services could again be considered.¹² Hospice provides a relatively consistent package of services and benefits designed to meet the needs of patients and families facing life-limiting illness. Hospital-based palliative care programs vary considerably in the services and benefits they provide due to the lack of a specific payment mechanism. Hospital-based palliative care programs often lack the extensive use of volunteers that hospice programs use to extend their staff services. Quiz Ref IDPalliative care programs may offer some after-death bereavement support, but hospice programs are mandated to provide 12 months of bereavement follow-up to every family they serve.⁶

Ultimately, the decision to refer a patient to hospice is based on the patient's informed preferences. The process of referral is a delicate one. It is generally best to help the patient and family to clarify their goals of care and quality of life and to present all available options, rather than only the next available treatment. Connecting the patients' goals to the services provided by hospice makes these difficult conversations much easier.²¹ Timely referral to hospice services is important in that family members who perceive that the referral was late reported more concerns with the quality of care, higher unmet needs, and lower overall satisfaction.²² Additionally, patients with short length of hospice care receive fewer services, and they may not benefit from the full input of the interdisciplinary team.²³

Even if patients are being cared for by a hospital-based palliative care service, there may come a time when hospice would best meet their needs. Box 2 provides a set of questions a primary care physician may ask of local hospice programs to help guide the referral. Quiz Ref IDAlthough the origins of hospice were developed as volunteer programs that did not have federally endorsed national standards or certification programs, Medicare now has conditions of participation that require an interdisciplinary team of physicians, nurses, and other health care professionals; use of volunteers; bereavement services; availability of rehabilitative services including speech, physical, and occupational therapies; short-term inpatient care; and home health aides. The implementation of these conditions of participation has improved the range of services and professionalism of hospice programs.²² Ninety-three percent of hospice programs are now Medicare certified.² Still, there is variation in the delivery of these services and the quality of care.^{24 - 26}

Adapted in part from the National Hospice Foundation guide on choosing an hospice program.¹⁵

Referral to a hospice program should be weighed with the same gravity as one would when referring a patient to a cardiovascular surgeon for bypass surgery. Although hospice does not yet have the mandatory reporting of outcomes required of acute care hospitals, nearly one-third of hospice programs are already voluntarily submitting data to the National Hospice and Palliative Care Organization,^{26 - 27} reporting benchmarks of structure (eg, registered nurse staffing, use of volunteer services), and process and outcomes of care (eg, bereaved family evaluations using the Family Evaluation of Hospice Care).

Quiz Ref IDHospices providing excellent quality of care at the close of life will comprehensively assess patient pain to understand its cause and both pharmacological and nonpharmacological approaches to its management, including the appropriate use of adjuvant medications, such as gabapentin for neuropathic pain. Policies and procedures should be in place to ensure that the use of opioids and other sedating medications are based on patient choice. All members of the interdisciplinary team should be available at time of a crisis, regardless of when it arises. A minority of patients dying while in hospice care will need an intensive caring unit, usually a free-standing inpatient hospice unit, to enable changes in the administration of medications on an hourly basis, including those rare cases in which the use of palliative sedation is the only possible means of symptom relief.

Like hospital-based palliative care programs, hospice programs must evidence understanding and respect of the unique values of the patients' culture. For non−English-speaking patients, the availability of appropriately trained translators is an important first step. Supporting families and friends in their caregiving role is essential, as one family member in a recent focus group summarized, “You know what to expect [with the patient disease course], how you can help, and what you can expect [from hospice].”¹⁶ Evidence of families' frequently taking patients to and from the emergency department may highlight inadequate family education and lack of on-call staff to consult with and support at-home symptom management. Hospices must ensure seamless transitions of care across the setting of care, including transitions to the emergency department or acute care hospital. A hospice striving for excellence will support the primary care physician's role as being in charge of care, will keep him/her informed of all critical changes, and will develop a care plan with his/her involvement.

As required by the new Medicare conditions of participation, all certified hospices must engage in quality assessment and performance improvement activities and be able to articulate to referring physicians how they measure quality and the number of complaints received and how they were resolved. Brown University's Center for Gerontology and Health Care Research and the National Hospice and Palliative Care Organization have partnered over the past decade to provide actionable data collection tools and resources for hospices with the goal of helping ensure that care is competent, compassionate, and coordinated.²⁶ Medical record review and surveys of bereaved family members have been used to evaluate the quality of hospice. Chart-based indicators are relatively simple and currently being validated.^{28 - 29} Yet careful thought needs to be given to what counts as documentation. For example, is a physician note “met with family to talk about CPR [cardiopulmonary resuscitation]” adequate evidence of a family meeting? Additionally, the medical record reflects the health care professional's view and may not reflect the patient or family’s perceptions of a conversation.

Consumers' perceptions are fundamental to any assessment of whether care at the close of life is patient-focused and family-centered. Although the ideal assessment is interviewing patients, the short length of stay in hospice care results in a very biased group of patients being interviewed, and there are important respondent burdens in interviewing dying patients.³⁰ Thus, bereaved family members are an important source of information on the quality of hospice services.

The Family Evaluation of Hospice Care Survey²⁶ is the only tool to examine the quality of hospice care that has been endorsed by the National Quality Forum.³¹ Not only must data be collected, but actionable reports must be prepared that allow the hospice team to monitor and improve quality of care. A voluntary repository for hospices enables them to collect and analyze bereaved family member surveys plus receive quarterly benchmarks and information on improving care. Nearly 1500 hospices are currently participating, but most reports are not publicly available. However, quality of care for patients with dementia in hospice³² and disparities among bereaved black family members compared with white family members have been published.³³

To provide clinicians, patients, and families with the information they need to make informed decisions, the Centers for Medicare & Medicaid Services should report publicly on the quality of hospice care services, using an instrument that measures key processes and outcomes of care based on what both consumers and experts believe are important and should be responsive to interventions and changes in hospices over time.

Increasingly, primary care physicians will debate the choice faced by Mr K's physician—how and when do I refer a patient to a hospital-based palliative care service or hospice? Ultimately, this decision should be based on which array of services best meet the goals and needs of that patient and family. Although there is substantial variation in existing hospital-based palliative care services, the array of services for hospices is defined by the reimbursements, Medicare conditions of participation, and National Hospice and Palliative Care Organization Standards of Practice for Hospice Programs. Even when the patient is initially referred to a hospital-based palliative care service, a point in the disease trajectory is reached when most patients, will choose to enroll in a hospice. Although the majority of hospice programs strive for excellence, the quality of care varies and a reporting system is needed that will help primary care physicians, patients, and families choose a hospice based on publicly reported outcomes. Whether the dying patient receives care from a hospital-based palliative care service or a hospice, the guiding principles must be to strive for competent, compassionate, and coordinated care.