When Recovery Takes Longer: How to Incorporate Palliative Care in LTACHs

As palliative care has become more widely recognized for its benefits in whole-person care, it has also been increasingly accepted and incorporated into the provision of acute care.

Thanks to CAPC’s work over the past twenty-five years, a majority of hospitals with 50+ beds across the United States now have palliative care teams as a routine part of the care they provide to patients. The growth of community-based palliative care teams has also been significant in recent years, reaching people where they live and helping them receive medical interventions and care concordant with their goals and values.

One area that continues to lag in the incorporation of palliative care as a part of the care team are Long Term Acute Care Hospitals (LTACHs), even though patients in these facilities have complex medical conditions with a high degree of mortality and require a multi-disciplinary approach to care. The reasons for this are not clear but could be in part due to financial pressures and the workforce shortage, though about 40% of LTACHs without a palliative care program were located in areas of the country with higher levels of palliative care physician capacity.

These patients and their families face ongoing decisions regarding the medical treatment options available to them. In my opinion, palliative care would be an ideal solution to the challenges of caring for these patients, and their families. This is especially true when family members may disagree regarding what might be the best care option.

The World Health Organization (WHO) acknowledges that palliative care assists in preventing and relieving suffering through early identification, assessment, and appropriate intervention of pain and other problems—whether physical, psychological, spiritual, or social. Stressors for family members of people living with serious illness are known to be higher, and the frailty of an increasingly aging patient population with extensive co-morbidities, and therefore potentially poor outcomes, presents many opportunities for increased communication, especially around advance care planning and establishing goals of medical treatment. This is particularly true in the intensive care unit (ICU), where the burden of illness and associated stress is even higher for patients and for the staff caring for them.

When patients transfer to an LTACH, these stressors do not necessarily disappear. They may even increase, leading to family conflict and, therefore, have ongoing needs for facilitated conversations focused on doing what is truly best for the patient from a holistic perspective. This enhanced communication is supportive for patients, families, and facility staff.

There is now recognition that palliative care reduces the risk of post-intensive care syndrome (PICS) and provides higher satisfaction levels. Stress is also lower due to increased communication and shared decision-making, enhancing participation in patient care. Data show that discussing prognosis and addressing potentially unrealistic expectations around medical treatments is important, as it helps patients and families make truly informed choices and decreases overtreatment and ICU length of stay without impacting mortality.

When palliative care is incorporated early in the patient’s care course, and the team collaborates closely with the rest of the medical team, families are more effectively prepared for the decisions presented. They can also develop a solid plan to move forward to provide goal-concordant care for the patient. Establishing the goals of medical treatment early on helps guide the course of interventions and overall care. It allows families to feel that their preferences, or those of the patient, have been respected and that the patient has received the best care indicated for their medical situation. Maintaining this focus in the LTACH setting may also help to decrease family conflict regarding ongoing interventions.

Effective symptom management for patients with serious illness is imperative. Additionally, their families need support as they journey through the patient’s recovery course in the ICU, which may be longer than anticipated and look very different than envisioned. If it becomes apparent that further medical interventions may not be helpful or even indicated, re-evaluation by the multi-disciplinary team of the possibilities needs to occur with the involvement of the medical decision maker, family, and, when possible, the patient themselves. The next step in the patient’s care continuum may look different depending on their goals and the options available.

When potential recovery or rehabilitation possibility may be prolonged, a patient may be offered the opportunity to transfer to an LTACH for ongoing interventions, where the average length of stay is at least 25 days. When they have received palliative care support before this, they often feel well prepared for the ongoing decisions that they may face, but also may be expecting that this would be a part of their care experience at the LTACH. Unfortunately, this is not the case, and in many areas, there are not even LTACHs in the immediate vicinity. Additionally, the options for a long-term care facility equipped to care for individuals with more complex needs, such as a tracheostomy or long-term ventilator support, are very limited in many areas.

So, on top of dealing with a serious illness with prolonged medical needs, families may be faced with having to place their loved one in a facility many hours away from family support. And, if they want to stay at home, options for adequate support for care in this setting are also limited.

LTACHs provide care for patients suffering from prolonged, complex, serious illnesses requiring ongoing inpatient care. This may include prolonged mechanical ventilation, complex wound care, nutritional supplementation, renal support through dialysis, or rehabilitation through skilled therapies.

LTACHs provide care for patients suffering from prolonged, complex, serious illnesses requiring ongoing inpatient care. This may include prolonged mechanical ventilation, complex wound care, nutritional supplementation, renal support through dialysis, or rehabilitation through skilled therapies.

Patients may have tracheostomies or percutaneous gastrostomy tubes (PEGs) that were placed during the more acute phase of their illness that then require care or even removal. LTACHs care for over 100,000 people, generally older, with multiple comorbid conditions each year. Unfortunately, half of the patients in these facilities die within the first year following admission, with the median survival for this patient population being only eight months. Many may require ongoing residential care in a facility having not been able to return to their prior level of function or health. Understanding options for ongoing care is, therefore, of the utmost importance as decisions are made regarding possible interventions, assisting in setting expectations for realistic outcomes.

Given their increased morbidity and mortality, these patients are certainly appropriate for specialty-level palliative care involvement. They can benefit from the improved quality of life and decreased burdensome interventions that have been demonstrated in other acute care areas. These patients and their families deserve the increased support and communication offered by palliative care teams, which could be integrated into the care provided at LTACHs via various paths.

Training existing staff members in core palliative care skills is an excellent first step. This involves educating members of the interdisciplinary team in advanced communication skills and effective symptom management techniques.

Fortunately, we also have seen the development of many telehealth opportunities in recent years that would enable care teams to incorporate specialist-level input from remote programs, which could effectively supplement and support a primary palliative care team within the LTACH. Another option would be to incorporate specialist-level clinicians onto the team, thereby truly embedding palliative care into a holistic care approach.

In that case, the focus would be on recovering maximal functional status and quality of life while also ensuring that patients and families know their ongoing options for medical treatment interventions or support. While this would certainly be optimal, the budgetary implications do need to be considered, so contracting with a local palliative care team could also be a good option.

This could look quite different depending on the resources available and the volume of patients in the facility. In fact, many smaller community hospitals utilize this approach to incorporate palliative care into their care. A medical provider—either a physician, nurse practitioner, or physician assistant—could come to the facility one or more days per week to see patients.

As for how this would play out, the support could be in the form of consultations to provide recommendations for symptom management, supportive conversations around goals of medical treatment, or there could be a more collaborative co-management approach. Staff support should also not be ignored in this setting, where stress can be high over a longer period of care, and conflicts within families are common regarding various interventions. When palliative care is involved, staff can feel more confident that the patient’s wishes are being followed and any moral distress is avoided—due to the focus on goal-concordant care and increased communication and collaboration with family members, helping to reduce potential conflicts.

Reviewing the National Consensus Clinical Practice Guidelines for Quality Palliative Care may help guide planning for incorporating palliative care. Utilizing CAPC resources can be a helpful addition to the toolkit for administrators and clinicians as they facilitate providing this type of care. From building a program to defining and measuring quality and clinical training modules, CAPC supports facilities in enhancing the care of patients and families by incorporating palliative care principles into the whole-person care model.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.