Horn, Judith; Irion, Glenn L.
Palliative care, according to the World Health Organization, is “an approach that improves the quality of life of patients and their families facing the problem 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.” This definition is given under the heading of cancer, but is applicable to other life-threatening illness. It implies that we continue to strive to improve the quality of life of the patient and caregivers in spite of the high probability of loss of life. As health declines, the skin becomes more susceptible to injury and without due vigilance, otherwise preventable skin injuries might lead to decreased quality of life.
Hospice care is a specialized service reserved for situations in which medical curative treatments are no longer an option or no longer desired, but the patient desires symptom management and comfort care. Hospice care can be considered as enhanced palliative care, focused on the last months of someone's life as well as the bereavement period that follows for the family.
Hospice enrollment policies differ and can be restrictive. A 2012 survey (ECRI 12/12/12) found many barriers to enrollment and a lack of policy consensus. For example, 61% would not enroll patients receiving chemotherapy and 8% would not enroll patients with a feeding tube as these interventions may be seen as “curative,” rather than comfort care as Medicare policies require that patients forgo reimbursement for curative treatment.
Other important terms for the discussion of end of life care include Advance Directive (AD), Do Not Resuscitate (DNR), Do Not Hospitalize (DNH), and Physician or Medical Order for Life Sustaining Treatment (POLST or MOLST). An advance directive is not a medical order, but it serves to communicate patient preferences and to give patients the right to make informed decisions concerning medical care. In the case of a life-threatening event, the patient with a DNH is allowed to die at home instead of being transported to a facility consistent with the patient's wishes. Although DNR is a medical order of “Do not resuscitate,” different options are available with regard to whether interventions including CPR, pharmacologicals, and equipment such as intubation are permitted. POLST (or MOLST) is designed to guide the care provided by all health care providers and may include allowable resuscitation techniques and limits on the technology provided to sustain life. The POLST form complements an AD and is not intended to replace that document. According to information from the POLST website (http://www.polst.org/), the values expressed on both documents should ideally be the same. If a conflict exists between the two documents, communication with the patient or surrogate should take place to determine current preferences. If this cannot be done in a crisis, the most current document should be followed. POLST use is still evolving, and hospitals and facilities may still use other documents in addition to POLST. It is essential to know your state laws and facility policies.
SKIN FAILURE AND SYMPTOM MANAGEMENT CONSIDERATIONS
The concept of “skin failure” does not have the long history and public understanding associated with other forms of organ failure. Widespread discussion of skin failure as an entity was largely prompted in 1989 by the clinical description of the Kennedy Terminal Ulcer as a specific subtype of pressure ulcer that develops during the process of dying.1 It was described as having a pear, butterfly, or horseshoe shape and occurring predominately on the sacrum, with a seemingly sudden onset and rapid deterioration. Development of such an ulcer was associated with being within 1 to 2 days of death and is consistent with the premise of skin function compromise at the end of life. Some debate as to the actual pathophysiology of the Kennedy Terminal Ulcer has occurred since then as some have opined that these represent deep tissue injury in a particularly compromised area because of sacral edema and shearing forces associated with highly limited mobility.2
In 2006, Langemo and Brow proposed a working definition of skin failure, which included skin failure being the result of hypoperfusion, the creation of severe inflammatory reaction, or failure of multiple organ systems.3 In 2009, the Skin Changes at Life's End (SCALE) panel proposed skin failure to be due to the failure of homeostatic mechanisms at the end of life and the diminished reserve to handle “insults such as minimal pressure.”4
Although the term “skin failure” might imply that wounds at the end of life are inevitable, we may divide skin failure events into avoidable and unavoidable. For example, device-related pressure ulcers, injuries because of skin folds, and incontinence might be preventable with sufficient care. In some cases, pressure ulcers may show signs of healing even at the end of life.5
In addition to pressure, other wounds are associated with end of life. Fungating wounds are characterized by ulcerations and necrosis that usually have a foul smell. This kind of lesion may occur in many types of cancer, including breast cancer, melanoma, squamous cell carcinoma, and especially in advanced disease.6
Several symptoms associated in particular with wounds at the end of life include exudate, malodor, bleeding, fragile periwound skin, tunneling, undermining, edema, infection, pruritis, pain, aesthetics, body image, comfort of dressing, frequency of dressing changes, and pain during dressing changes.
Often, we are confronted with the issue of treating arterial wounds despite the poor prognosis for healing. In the case of the end-of-life wound, a similar type of strategy could be used. We cannot heal them but we manage them. Should we consider similar strategies for arterial and end–of-life wounds? Although we are typically geared toward active wound management to create a moist wound ready to heal, might we want to apply lower extremity arterial disease evidence to end-of-life wounds? Is a moist wound environment and active wound management contraindicated in some situations? Should interventions instead focus on topical antimicrobials and antiseptics to reduce local bacterial count and subsequent invasion of organisms into proximal viable tissue?
POPULATIONS AND SETTINGS
We may tend to consider hospice and palliative care to occur in a specific setting. In reality, palliative care may occur in almost any setting and care needs to follow the patient, not the setting. Palliative, hospice, and end-of-life care are not buildings or one's setting.
Identifying patients in need of hospice and palliative care is more complex than receiving a referral for wound care in a hospice facility. Although the focus on end of life may be frail elders, such patients may be of any age and be located in various facilities such as acute care, long-term care, home, and outpatient. However, settings should still be considered because they may vary in terms of patient support, caregiver support, and facility/program/policy variation for patient and or family participation in self-management.
Additional factors to consider in the palliative situation include disease-related problems that led to the life-threatening situation, comorbidities such as Alzheimer disease and diabetes, treatment-related problems such as surgery, chemotherapy, and radiation; general health and immune status; and support systems (family, financial, community); and the patient's ability to participate in decision making.7
Palliative care has been addressed previously by a number of organizations and task forces. Some of these have resulted in guidelines including some simple mnemonics to address patient care. Common themes of end-of-life wound management are self-management and outcomes. The Centers for Medicare and Medicaid Services (CMS) mandate a “patient-centered, outcomes oriented approach to care.”8
The SCALE consensus document provides a mnemonic, the five Ps. These include prevention, prescriptive, preservation, palliative, and preference. Prevention is straightforward with the idea of limiting the severity of the condition. Prescriptive refers to having an evidence-based, outcome-driven plan for appropriate treatment, rather than disjointed plans of care. Preservation is used to prompt the idea of maintenance without deterioration in this population and the adaptation or compensation to declining status. Palliative reinforces the principles already discussed above concerning the individual who may not heal from a wound, and preference is a reminder of the autonomy of the patient in making decisions for health care.
A mnemonic taken from the nursing model that addresses additional aspects of care at the end of life is “CARES.” These stand for comfort, airway, restlessness and delirium, emotional and spiritual support, and self-care and stress management for the health care provider.9 Other guidelines do not specifically address the issue of restlessness and delirium or stress management for the caregivers.
Another example of nursing interventions referenced in the SCALE document is “HOPES.” These address the most pressing issues regarding wound care at the end of life: hemorrhage or bleeding, odor, pain, exudate, and superficial infection. This mnemonic cues us specifically about the key differences in priorities between promoting wound healing and management of wounds at the end of life. Addressing these five aspects is expected to improve the patient's quality of life.4
CERTIFICATIONS AVAILABLE FROM THE JOINT COMMISSION
In addition to overall accreditation of health care facilities, The Joint Commission offers disease-specific certifications, including wound management and palliative care. Facilities must be accredited by The Joint Commission before applying for program certification.
Palliative care certification has standards in several categories, including 8 for program management, 6 for provision of care, 3 for information management, and 4 for performance measurement and improvement. The certification process places a strong emphasis on symptom management and control, patient/family-centered care, quality of life, patient/family satisfaction, resource utilization, and data-driven decision making. All disease-specific programs have a certification period of 2 years with ongoing intracycle requirements. Interdisciplinary practice based on clinical practice guidelines is required.10
PHYSICAL THERAPIST PRACTICE AS MAINTENANCE THERAPY
The Agency for Healthcare Research and Quality recommendations for palliative care for the patient with incurable cancer or advanced disease include monitoring the patient's functional capacity as this is the single most important predictive factor in cancer performance status and functional ability. These guidelines suggest that patients who spend more than 50% of their time in bed/lying down have a life expectancy of 3 months or less.11
Although payment has historically been denied for skilled services that could be described as maintenance therapy, and Medicare regulations require physical therapy services to be provided by a licensed physical therapist, the role of physical therapy in “skilled maintenance” has been addressed to some degree in palliative care. Medicare regulations do allow maintenance to be reimbursable in certain circumstances such as supportive care.12
In 2013, the Jimmo v. Sebelius settlement led to an agreement to clarify CMS coverage regarding maintenance therapy, stated as “Coverage of therapy does not turn on the presence or absence of a beneficiaries potential for improvement ... but rather on the beneficiaries' need for skilled care.” According to the terms of the settlement, CMS is to complete program manual revisions by January 23, 2014.12
The American Physical Therapy Association has developed a task force on the role of physical therapy in hospice and palliative care, and the house of delegates has produced the following position statement regarding the role of physical therapy in hospice and palliative care: “Whereas, individuals facing life-threatening or terminal illnesses frequently experience decreases in strength and functional capacity and encounter symptom management and pain control issues that can impair quality of life....”13 In addition to the development of a position statement, this task force is actively working to increase knowledge and resources in this area.
Case reports are presented below to highlight some of these issues and how wound management to promote healing and to provide comfort care differs.
Case 1 involves a 70-year-old man seen as an inpatient post-right arm amputation because of cancer 6 months ago. He lives with family and his daughter is a healthcare provider. He had been receiving home health services, but required multiple hospital readmissions because of drainage and malodor from a fungating wound.
Evaluation, Diagnosis, and Prognosis
This is a 70-year-old man post-right shoulder disarticulation amputation because of recurring cancer. The diagnosis fits Integumentary Practice Pattern E and Musculoskeletal Practice Pattern J.
The plan of care is geared toward preventing further readmission to acute care with a discharge plan for home hospice care. The outcome measurement tool chosen was the Patient-Specific Functional Scale.
As this wound was considered to be not healable, interventions were directly solely to symptom management. Direct interventions included the selection of a silver and charcoal dressing to control odor and bioburden in the wound cavity with a transfer dressing (low adhesion) to move exudate to additional absorptive materials. A custom trunk garment was provided to secure the dressings and improve body image.
Patient/client education included instruction for dressing change, methods to reduce caregiver burden such as criteria for changing which dressings. This improved the patient's comfort in addition to reducing caregiver burden.
After the initiation of this treatment plan, the patient's wound could be managed at home with no additional emergency department or hospital readmissions. The patient passed away at home. Per his daughter, this palliative care wound management plan increased his comfort and body image, and allowed more quality time for visiting rather than managing dressings and increased his time out of bed to chair.
A 78-year-old woman with lung cancer and peripheral artery disease was seen in an outpatient setting. She had been receiving hospice care at her assisted living residence. Her primary problem was the caregiver burden of time and cost for dressing assistance. She was using a wheeled walker and wearing a post-op shoe because of bulky dressings on her right leg and foot, which increased the energy expenditure of her walking. Social isolation of the patient because of decreased functional status was also a major concern in the development of her plan of care.
Evaluation, Diagnosis, and Prognosis
Diagnosis: Integumentary Practice Pattern D, Cardiovascular/Pulmonary Pattern E.
Prognosis: Diminished impact of wounds on functional level.
Discharge Plan: The patient wishes to remain in her acute long-term facility as long as possible.
In addition to determining the optimal materials for dressing changes, energy conservation was taught to allow the patient to be more socially active. The bulky dressings used previously created multiple problems for the patient. As in case 1, the dressings were using valuable resources and took time away from the patient's social activity. In addition, they interfered with her mobility. An alternative to moist wound healing is appropriate in this case. Because of the difference in palliative care and typical wound management, creating a moist environment to promote healing was not appropriate. Antiseptic and silicone foam allowed a simpler, and less painful, dressing change for the patient.
A decrease of patient and family burden of daily dressing changes was seen because of the use of antiseptic and silicone foam. The patient experienced decreased pain compared with the previous plan that inflicted pain from wound cleansing and dressing removal. These dressing materials also decreased the cost by decreasing the amount of time spent on dressing changes. Because of the slimmer nature of the new dressing technique, the patient was able to wear her regular shoe, decreasing the work of walking and providing for more social interaction. The use of antiseptic on the foot wounds instead of selective debridement and the use of silicone foam dressings on the lower tibial wounds decreased both the frequency of dressing changes and the pain of dressing removal. As a result the patient was able to enjoy the dining room instead of receiving all of her meals in her room. She was also able to go out to lunch with her family because of decreased energy of walking (Figure 1).
History, Systems Review, Tests, and Measures
A 44-year-old woman with multiple sclerosis was seen in home health. Her primary caregiver at home was her husband. She was experiencing severe vertigo. Vertigo is estimated to occur in 20% of patients with multiple sclerosis.14 At the time of the initial visit, she was nonambulatory and her Braden score indicated that she was at very high risk for pressure ulcers. She would self-position primarily on her left side and she had a depressed mood.
Evaluation, Diagnosis, and Prognosis
Diagnosis: Integumentary Practice Patterns D, E; Neuromuscular Practice Patterns E, I.
Because of her condition, the predicted level of function was limited to assisting in repositioning and verbalizing the need for repositioning. Her discharge plan was to return home; however, the patient ultimately had multiple admissions between acute care, home, and long-term care.
Direct interventions consisted of positioning and support surface selection. Patient/client education was focused on pressure ulcer prevention, limiting the severity of her ulcers and infection prevention. In her case, coordination/communication and documentation were especially important. She required a 24/7 schedule for her positioning and support surface needs.
To protect her skin, a low air loss bed system, heel boot protectors, dressings for prevention and treatment, and negative pressure wound therapy (NPWT) were provided. In her case, the NPWT was bridged to multiple areas.
This patient continued to have a lack of mobility and activity. She had limited participation or declined to participate in positioning and related interventions including medical nutrition therapy and remained bed-bound 100% of the time. She expired due to sepsis. At her death, she had multiple stage 4 ulcers with undermining and sinus tracts that were worse on her preferred side. In this case the pressure ulcers were not Kennedy terminal ulcers.
History, Systems Review, Tests, and Measures
A 97-year-old woman with multiple organ failure was transitioning from an acute care facility to long-term care facility. On the Pressure Ulcer Scale for Healing (PUSH) tool (see www.npuap.org), her sacral ulcer had a PUSH score of 17. On the PUSH scale, scores range from 0 (healed) to 17.
Evaluation, Diagnosis, and Prognosis
Diagnosis: Integumentary Practice Patterns E, Neuromuscular Practice Pattern I.
Plan of care goals included symptom management—decrease pain with wound cleansing and dressing removal/changes and prevent readmission to acute care hospital.
Discharge plan: Discharge to hospice within a long-term care facility.
This case represents a transition in care from trying to facilitate healing the wound in an acute care facility to providing comfort for the patient in a palliative care situation. As she was already in a condition of multiple organ failure, the sacral ulcer was also likely to be caused by skin failure. This case is being discussed in the context of the five Ps—prevention, prescriptive, preservation, palliative, and preference. The sixth P—planning had not been done at this point. Nothing was documented indicating her wishes. The patient had surgery and NPWT had been placed for the management of overwhelming drainage. The family decision-making process had not been fully developed. They needed more information to make an informed choice regarding palliative care measures over curative measures and the transitions from palliative to hospice and then end of life.
Alternatives were explained to family using the SCALE principles and the concept of skin failure. Coordination, communication, and documentation were critical between the physician, nurses, and case management to reach the goal of preventing hospital readmission. Failure to communicate this goal could have resulted in readmission for problems related to her wound or multiple organ failure. Although the goal was to prevent hospital readmission, this does not mean that we give up. The skin as an organ may continue to deteriorate despite our best efforts, but our plan is built around preventing pain, discomfort, and to as much as possible honor the patient's preference. Therefore, coordination of care was arranged around symptom management, rather than fighting against failure of the skin and other organ systems.
Reassessment and Outcomes
The NPWT system was discontinued with transition from palliative to hospice. Alternate dressings included a self-cleansing, nonadherent dressing to manage the drainage with a silicone/foam cover dressing with low adhesion to prevent discomfort with dressing changes. This dressing combination was selected to prevent further injury to the wound and surrounding skin. A prescribed plan of care for her sacral ulcer was defined and carried out. Positioning and skin care was performed to preserve the integrity of her skin elsewhere. A self-cleaning dressing that was capable of managing drainage and a low adhesive property was used for the palliative issue—providing comfort and care. The patient's preference was to stop NPWT because of the discomfort created by having to change the foam and the presence of the device itself.
CULTURALLY COMPETENT CARE AND HEALTH LITERACY
In addition to the principles of palliative wound care discussed before and during these cases, we must consider how these cases would be managed if these patients and families spoke English as a second language. Would the patient/family know why they are receiving this care and how it is related to their condition? If a surveyor interviewed the patient/family, would they be able to validate the education you have provided? Do you use a written self-management plan in the patient's preferred language? Do you document the patient/family response to teaching in the medical record?
As much as possible we should involve the family. Tasks such as turning schedule and heel protector use are ideal starting points. Some family members or entire families may be reluctant to discuss the plan of care. Empower them to participate and to ask questions, and use teach-back techniques with emphasis on “what to do” and important information first.
Being involved with other health care providers can enhance the patient's comfort and mobility. Rounds or plan of care meetings can be done in any setting. There, we can collaborate with dietitians, diabetic educators, speech language pathologists, ostomy nurses, and other health care providers. Having a general knowledge of devices such as percutaneous endoscopic gastrostomy tubes, vertical tube attachment devices, total parenteral nutrition, diets, and laboratory values allows us to share ideas of how to maximize the performance of the devices while minimizing their discomfort and mobility restrictions or to help the patient and family make informed consent for the continued use of any devices. For example, patients with ostomies may unnecessarily self-limit their function because of wound or ostomy leakage.
Multiple concepts, definitions, and acronyms were introduced with regard to palliative care. No single guideline or path for all health care providers exists. However, more medical and nursing models have been developed than physical therapy models. These models have common themes of patient-centered care, patient self-management, and patient empowerment. At this time, increased physical therapy involvement is needed in interdisciplinary models of care. APTA sections working on hospice and palliative care include acute care, geriatrics, oncology, and clinical electrophysiology/wound management in addition to the hospice and palliative care task force.
Successful palliative wound management requires both functional management and integumentary management. Although general principles and case reports have been presented to illustrate these principles, best practice for pressure ulcer and wound care in hospice, palliative care, and end of life has yet to be determined.
© 2014 by Lippincott Williams & Wilkins, Inc.