Thinking Ahead

A critical element in keeping end-of-life patients at home and out of the emergency room is the capacity to anticipate what crises a given patient may encounter, especially over the next 24 to 48 hours. In an inpatient facility, staff, supplies, and medication are available and readily accessible. For patients at home, it may take hours for a nurse or physician to attend to the patient and even longer to arrange for special supplies and medications. This may be particularly problematic at night or on the weekend. A basic task of the clinician providing care at home is to inform the patient and caregivers about what might occur in the near term of the next few days. For many people, “forewarned is forearmed.” With appropriate education, caregivers will be able to implement appropriate interventions if they have been adequately prepared. The home care clinician is responsible for ensuring that the necessary medications and supplies are in the home. The items that it is possible to have on hand are fewer than in the in-patient setting. However, hospice palliative care providers in many areas have developed emergency medication and supply kits. These kits typically contain the supplies necessary to deal with the common palliative care emergencies. The kit may be placed in the home either at the time of first visit or when the team feels it is appropriate. In the event of a crisis, caregivers can be instructed to open the box and access the necessary medications. Other providers have taken a more focused approach and will order medications and supplies to have on hand that are specific to a given patient’s needs. An extreme example of this is the patient at risk for sudden airway obstruction who wishes to stay at home to die. The family and patient should be fully informed as to what to expect if the patient develops signs of airway obstruction. A common approach in this situation would be to insert a subcutaneous line to allow for parenteral access and have preloaded syringes of an opioid and sedative on hand. Caregivers can be taught how to administer a “stat” dose of the appropriate medication while telephoning for further direction or awaiting a member of the home hospice palliative care team.

Managing with Limited Access to Diagnostic Interventions

A hallmark of modern medicine is easy access to laboratory tests and diagnostic imaging. The clinician providing home hospice/palliative care must learn to cope with limited access to these modalities. Bloodwork at home may be available, but it may only be on a delayed basis. Mobile radiography and ultrasound may not be available or practicable at all in many jurisdictions. Given the frail state of most patients at this stage of their illness, careful consideration must be given before deciding to transport someone for tests. As a result, the home hospice/palliative care clinician must be comfortable with a certain degree of diagnostic uncertainty when confronted with an acute or unexpected situation. In these situations, one should be reminded of the dictums from training; history, history, history and common things are common. In some situations, time will tell the tale. Initially, it may be hard to determine on the basis of a history and physical alone if the house-bound ovarian cancer patient with abdominal pain and no bowel movement for 5 days is constipated or obstructed. The clinician would not want to give laxatives to a patient who is obstructed. Similarly one could worsen the condition of the constipated patient by implementing a treatment algorithm for bowel obstruction. Symptom progression over time may help one sort out this diagnostic dilemma without having to transport the patient for an x-ray examination. Clinicians should openly discuss the issue of diagnostic uncertainty with the patient and family as part of the consent for your recommendations. There will be patients who are prepared to accept a certain amount of uncertainty if it means they do not have to make a trip for tests. Others may push themselves in an extreme fashion to have a specific test performed to know “exactly what is going on.” Regardless of their inclination, patients and their families will generally be very understanding of the limitations imposed by the circumstances and will appreciate your careful consideration of their situation.

Delegating Medical and Nursing Tasks to Family Members

Patients and their families are frequently called upon these days to provide complex medical care in the home. It is amazing, at times, to see the care that laypeople with appropriate instruction are able to provide to their loved ones. Family members are routinely taught by hospice providers to accomplish rather advanced skills such as changing wound dressings, changing intravenous bags or even managing central lines, or administering artificial nutrition whether through the intravenous route or through a percutaneous endogastric tube. For patients at the end of life, family members can be enlisted to assess and manage symptoms, administer opioids, and utilize pain pumps. However, it is important that the clinician never assume that all caregivers and family members are up to the task at hand. Although many people are willing and able, a significant number are unwilling or unable to assist with care in this way. It is easy for family members to feel “guilted” into assisting with care that they are uncomfortable providing. Furthermore, once a caregiver has agreed to provide a certain type of care, the hospice palliative care providers must ensure that people are well trained and well educated about the task. For example, family members who are providing opioids when needed for pain at the end of life must be advised of the possibility that they may give a dose of medication and see their love one stop breathing a short while later. Given the common myths about opioids, it is easy to envision this person believing that their action of administering medication had a direct impact on the timing of their loved one’s death. Appropriate counseling about the possibility of there being a “coincidence” in the timing of a dose of medication and the person’s death must be provided before a family member administers a PRN (as needed) or even an RTC (round-the-clock) opioid dose at this point in the illness. Active, hands-on caregiving can be an enormously satisfying experience for some family members, whereas for others it can be extremely stressful and embarrassing. Clinicians providing home palliative care must take the time to assess a given family member’s capacity and willingness to perform various tasks.

The Interdisciplinary Team in the Home

The interdisciplinary team is the cornerstone of palliative care. The role and function of the interdisciplinary team is covered in elsewhere in this textbook. However, a few issues regarding the interdisciplinary team in the home setting should be highlighted.

There may be a need for greater fluidity in roles in the home care setting than there is in an inpatient facility. As a result, members of the various disciplines may have to stretch their “comfort zones” and perform tasks that may not be typically part of their discipline. In an institutional setting, the social worker who walks in the room to find a patient in a pain crisis can go out into the hall to find a nurse to assist. In the home setting, the social worker, as part of the interdisciplinary team, would be expected to be able to assess the situation, assist the patient to take some breakthrough medication, and call the nurse or physician to report in and request follow up. Similarly, a physician performing a home visit to follow up on medication changes from last week may need to counsel the patient’s children when one is enraged that the other is not “pulling their weight.” In this situation, the physician would need to perform some initial family counseling and arrange for follow up with the social worker.

It should be noted that not all home palliative care patients have access to the full range of professionals who, ideally, should make up an interdisciplinary team. Depending on where one lives and how home palliative care services are funded, the interdisciplinary team may be composed of a nurse and a physician. In some instances, the nurse is the only one seeing the patient, with the physician providing orders and medication from afar at the nurse’s recommendation. Under these circumstances, clinicians may really find themselves stretching to fulfill the various roles. For some, this can be extremely rewarding and refreshing as it forces one to “get out of the box” and learn new skills. However, it can also lead to burnout. Clinicians must be mindful of their limits and should create systems of supports both for themselves and their patients. Often, this entails actively recruiting others, such as the patient’s spiritual leader, if they have one, to be a “member” of that patient’s care team. Teams can come together around a given patient and disband at the time of death. Over time, these individuals working in the community may come to know each other and be able to function at an increasingly high level. For their own mental health, the clinician may need to identify a few peers with whom they can discuss cases and vent when necessary. Although most palliative care providers find their work highly rewarding, working in an environment where one is the “lone ranger” may not be conducive to a lengthy career in the field.

Clinicians Taking Care of Themselves on the Streets

Clinicians need to be cognizant of personal safety when providing home palliative care. Good clinical records on a patient before the initial visit may include sufficient information on the home situation. Working in the community involves a type of risk beyond that experienced by most health care providers who work in facilities. In addition to the angry and occasionally violent patients and families one has to deal with in health care facilities, the home health care worker may have to contend with areas of high crime, aggressive panhandlers, gangs, prostitution, poor driving conditions, and unsafe parking areas as they travel between patients. Exact statistics are hard to come by. A study done in Saskatchewan, Canada, in 1995 showed that nurses working in urban settings experienced twice as many assaults and five times as many threatening situations as their rural counterparts. Become knowledgeable about your organization’s safety policies and procedures and undertake appropriate safety education. Risk minimization strategies should be identified and implemented when relevant. Having two members of the team do a joint visit can be a very effective care intervention while providing a degree of peace of mind for the providers. It is essential that once a risky situation has been identified, a system exists to disseminate this information to the other team members and home health providers who may be involved in providing on-call and after-hours coverage. Some home care services provide escorts for clinicians in some settings. However, one should question whether a given patient is a candidate for home palliative care if an escort is truly required.

Respecting the Patient’s “Bad” Decision

Health care providers have all, at some point in training or practice, had a patient who has made a decision that is hard to agree with. For instance, we may be deeply troubled by a decision to insist on staying at home to die. Clinicians are often troubled by the 82-year-old widow with congestive heart failure who has no children and no family, lives in a squalid apartment, and insists that she will only leave her home “feet first,” or the 66-year-old bed-bound man with advanced cancer who is being abused and neglected by his alcoholic wife and similarly won’t leave his home to be cared for at an inpatient unit. Patients are well within their legal and ethical right to refuse offers of care, and we must respect their rights to make these decisions as long as they are competent. Caring for patients under these circumstances can exact an emotional toll on the clinician. Case conferences and team meetings should be used to discuss these challenging situations and allow providers an opportunity to share their feelings and frustrations.