Hi! How are you?”
So busy!
Me, too.
Busy-ness is gradually replacing the expected “good” as normal state of affairs. If one acknowledges they are “busy,” they achieve some measure of social status as active, engaged, and otherwise important enough to have a long list of tasks to manage. In other words, where “good” was once the normative social status to communicate “all is well and I am a positive contributor to our community,” now it is the more frenetic “busy” to communicate the ideal state.
What If I’m Not Fine? Or Not Busy? What If I’m hurt?
But what happens when people become ill or injured – when all is not “good” or “fine” or “well?” Or now, when illness and injury indicate that one can no longer be “busy” and contributing to the common state of affairs? Culture has shifted accordingly from “good/not good,” lived out in lines drawn between communities of the well and hospitals for the sick, now to lines blurred between the busy and the infirm, lived out organically in community-based palliative care centers.
Community based palliative care begins with the assumption that people are at their best when they are living together in community, busy giving and receiving care. When people become very ill, pain and stress reduce quality of life. Palliative care is a medical specialty staffed by a team of physicians, nurses, and other specialists who provide relief through medications and procedures to help patients live most vibrantly during a course of treatment, whether or not the treatment is curative.
Palliative Care and the Community
Palliative care is unique among medical specialties, in that it does not delineate between inpatient and outpatient plans of care. Instead, community-based palliative care can be ongoing for months, if not years, and does not have be mutually linked with end-of-life or hospice care.
Community based palliative care is a non hospital or hospice based care plan provided through clinics, nursing and other assisted care facilities, and in private homes. Patients remain connected with the community in which they most comfortably live, move, and have their being.
How to Access Community Based Palliative Care
Community based palliative care providers are often willing and able to come directly to the patient for evaluations, care, and to provide medication and some treatments.
Patients are often referred for community based palliative care via physicians (primary or specialty care) who note the pain that may be associated with specific conditions or symptoms, as well as those who are clearly suffering from unnecessary and chronic pain. Nursing and other assisted or skilled care facilities also frequently have relationships with community based palliative care, which can lead to referrals.
Hospitalists may also note a patient’s history of multiple inpatient stays and recognize that a patient may suffer fewer hospital admissions if pain were managed on-site at home or in a residential care facility. Sometimes, providing pain management care at home can become the bridge for patients who find car rides or other transportation to clinic and other health maintenance visits uncomfortable, if not impossible at times. Community based palliative care providers are often willing and able to come directly to the patient for evaluations, care, and to provide medication and some treatments.
Once a patient has been identified for referral, a member of the palliative care team will be in contact with the patient or their representative to offer general information about community based palliative care services and to document helpful information about the patient’s needs. This is the time to discuss hopes and expectations and to ask any relevant questions. Then, a team member will either visit the patient where he is she is located, whether that is at home, a residential care facility, or in the hospital to assess wellness and care related needs.
The palliative care provider will then connect with the patient’s medical team to be sure that the plan of care is coherent and helpful to the long term treatment plan, then with the patient and his or her family to clarify expectations and to be sure that the plan of care matches the patient’s overall goals and values. Finally, the care plan is enacted and adjusted as needed both for patient comfort and as the patient’s needs changes.
What Kinds of Care will Community Based Palliative Care Offer?
Community-based palliative care is also not solely a matter of receiving a course of prescription drug treatment. Instead, this type of care can be understood as the comprehensive involvement of a community that centers on prevention of suffering through both immediate pain management and symptom anticipation. Family members and other loved ones, medical teams members, therapists, and spiritual care providers all participate to best address a patient’s pain in concert with a patient’s values, goals, beliefs, and preferences.
Community based palliative care is of utmost importance in that this type of care continues to blur the lines between sick and well, busy and infirm. Patients can remain in the place where they are best cared for and connected with their community. In short, patients can remain both “good” and “busy,” as can the providers who seek to manage their pain. Everybody stays connected, which only promotes the greatest possible vitality of body, mind, and spirit in any and all circumstances.
