The original idea of hospice was to help patients stay at home and receive comfort care and pain management without having to go to a facility. Although services have since branched out to include care in several different settings, many families (understandably) prefer to have their loved ones stay in the home as long as possible and, preferably, until end of life. This requires a team of professionals working together in order to deliver optimal services under conditions that are often less than ideal.
First, private residences are not equipped to handle specific medical situations that would otherwise be routinely handled in a hospital or nursing facility. As a result, hospice agencies typically receive more after-hours and weekend calls to respond to the needs of home patients. In addition, these families are often tasked with doing most of the “heavy lifting,” such as providing bathing, bathroom needs, and cleaning up their loved one following an accident. This can quickly take a toll on all family members directly involved.
Secondly, special equipment such as hospital beds and oxygen concentrators must also be placed in the home to meet a patient’s particular needs. Most houses only have room for this equipment in the living room, thus effectively making the patient’s illness the center of the family’s emotional and physical existence. The ubiquitous presence of hospital beds, medication trays, and nebulizers (to name a few) serves as a constant reminder of the grave changes taking place in the family dynamics as well as the impending loss that will inevitably come.
Next, such families will usually be in need of more extensive hospice care including a social worker to assist with family issues that, while stretching back far into the past, are magnified by the present-day stressors involved in having a terminally ill loved one. The more family members involved typically means more opportunities for disagreements, hurt feelings, and decisional conflicts that arise from fear and guilt regarding the patient’s care. It is not uncommon in such situations for different family members to privately request that information from the hospice team be directly provided to them and them alone as they view themselves as the most responsible party. This can lead to rifts between the hospice workers and other family members as it is best practice to have everyone on the same page and to build as much trust and rapport with the entire family rather than allow one member to undermine the others.
Lastly, many times family members will want to keep the patient at home even when all indicators point to facility placement being the best option. This is born from guilt which clouds the family’s ability to rationally assess what is best for their loved one. In such cases a social worker will usually work extensively with the family to ready them for such a decision. It is a grueling process that can lead to much self-doubt and many hurt feelings no matter how well it is handled.
In closing, it is important to remember that it is entirely possible for hospice services in the home to go well, but the aforementioned pitfalls must be addressed in order to adequately prepare such families for potential complications. In the end, such education is the most responsible course of action and will be most effective when dealt with upfront rather than waiting until potential emergencies arise. Until next time.