By Jean McCaslin, RN, IgCN.
In every aspect of medical care, a patient-centric approach is invaluable. Each healthcare discipline must take into consideration each patient’s holistic need when undertaking a plan of care; psycho-social needs are particularly critical. Patients receiving immune globulin (IG) oftentimes are newly diagnosed with a chronic or debilitating disorder and experience adverse feelings. Care partners or family members may be equally affected by the diagnosis and prescribed treatment modalities.
With home infusion, a comprehensive approach is taken to be certain psycho-social aspects of care are addressed by each department including Intake, Client Services, Reimbursement, Pharmacy and Nursing. Communication by all team members with each other and with each patient can facilitate a smooth transition for the patient as their in-home infusion therapy begins. Some of the psycho-social concerns surrounding care include the following:
Patients may be anxious, fearful or depressed about the unknown nature of the disease process being treated with IG. Patients may not yet have accepted their diagnosis, yet are being asked to start a therapy of which they are unfamiliar. Some symptoms may make it difficult for a patient to conduct long telephone conversations with Specialty Pharmacy staff engaged in the provision of their therapy. A patient may be in one phase or another of the grieving process, exhibiting denial, anger, fear or a heightened sense of anxiety.
Patients should be encouraged to address questions about their diagnosis to their physicians. It may be helpful to provide links to disease-specific support groups as means to facilitate acceptance. Specific symptoms which limit patient telephone access should be addressed by the Specialty Pharmacy team. Perhaps a patient advocate may be assigned to complete the Intake process.
2) Prescribed Therapy
Patients typically have a lot of questions about IG therapy. In today’s digital society, patients may be confused or fearful by all of the information found on various internet search sites. Side-effects seen on the internet or described by an acquaintance may be exaggerated or misinterpreted. Learning the time needed to complete an infusion series may also cause concern.
Patient education is essential to patients receiving IG. Pharmacy and Nursing staff may alleviate fears and concerns that are specific to the infusion process. Diligent pre-infusion planning, including adequate hydration, pre-medication, product-selection and infusion rate management should be explained to the patient. An explanation of side-effect management modalities can be particularly helpful in addressing "fears of the unknown", which may in itself maybe a presenting symptom of anxiety.
3) Lengthy Intake and Approval Process
It is not unusual for a patient to be frustrated or confused by the amount of time needed to start home therapy. They are contacted by their physician staff as well as the Specialty Pharmacy Intake, Client Services, Reimbursement and Nursing staff. Once this process is completed, medical insurance authorization must be obtained. Authorization may be denied, leading to a series of appeals. Sometimes a patient may incur a hospitalization due to such delays. Patients may feel their disease process will debilitate them without IG treatment, leaving them despondent.
Expectations about the authorization process should be set early in conversations between a patient and their physician or Specialty Pharmacy. Keeping a patient informed about delays and the cause is important. Physician and patient engagement in the authorization process can be helpful. Every entity involved should be mindful a frustrated, fearful patient is ultimately anxiously awaiting the start of their therapy.
4) Financial Concerns
In present times, health insurance entities have passed an increased financial liability onto policy holders. Many employers have selected plans with higher premiums, co-pays, deductibles and penalties for using out-of-network providers. As the fate of the Affordable Care Act is threatened, many existing patients and newly diagnosed patients have become increasingly discouraged. More and more of a patient’s individual and/or family’s budget is being consumed by healthcare costs. Many have delayed or not started the costly therapies prescribed by their physicians as a result. One’s ill-health may take a back seat to other financial burdens faced by a patient. The ensuing panic and hopelessness is particularly devastating when the nature of an untreated illness can lead to irreversible disability and the potential for associated dependency on others.
Individualized attention to potential financial burdens placed on the patient must never be taken lightly; it is a huge responsibility. Every attempt must be made to analyze health plan cost-metrics when proceeding with the drug authorization process. Financial liability to the patient must be explained. When less costly options are available, they must be explained to the patient and physician. Drug manufacturer sponsored Copay Assistance Programs and diagnosis-specific Compassionate Care Programs should be used when possible. Payment programs are also an option for many patients. It is critical that reimbursement staff be empathetic, compassionate and communicative with patients. Explanation may reduce anxiety significantly for many fearful or confused patients.
5) Loss of Time at Work or School
Understandably, most patients are faced with the burden of lost days at work or school due to the disease process itself or through the testing needed to arrive at a diagnosis. Physician offices and diagnostic testing sites typically have operating hours of 9AM-5PM weekdays. There may be no other options but for a patient to use sick or personal time for work. Students may miss classes which can set them behind and threaten their GPA. Young students have the added burden of negative peer perception which can be devastating. Parents of young students, spouses and adult caregivers may also lose time from work or school. The caregiver may also need to make arrangements for the daily activities, meals and care of other family members. These factors further increase the financial burdens previously discussed, as missed days at work may be taken without pay.
When nursing for infusion therapy is scheduled, every consideration should be given to accommodate the constraints and complexities of the patient’s work, school, and/or caregiver’s schedule. For many patients, it is not feasible to receive their infusion therapy at a hospital or physician-based infusion suite. The operational hours may be problematic with their or their caregivers’ work or school schedules. When possible, evening or weekend infusions should be considered. Flexible scheduling reduces stress, increases adherence to therapy and may reduce cancellations or delays in the start of care.
6) Impact on Routine/Family
As earlier discussed, many patients have caregivers who are intimately involved in all aspects of the care of their loved ones; it could be a spouse, adult child, relative or friend. A caregiver oftentimes is overwhelmed by the demands of their own job, health issues, finances and family. For children who understand that a member of their family is ill, it can be especially devastating as they lack the emotional maturity to navigate their feelings.
Many family members face a myriad of emotions. One might oscillate from fear, to helplessness, to anger or panic. There may be interruptions to planned outings, school sporting events, travel, meal-planning, household routine tasks and to relationships in general. When the illness chronically affects a household, it can ultimately lead to resentment toward the patient. When a nurse or a Client Services Representative learns of a serious psychosocial concern, it is important it be reported to the physician so appropriate referrals be made.
Self-image is the way a person views themselves personally, as well as how they see themselves in relation to their achievements and value to society. It may include physical attributes which have been altered by a disease process or treatment modality. Having an implanted port placed, frequent venipunctures with bruising or irritated subcutaneous infusion sites may alter one’s self-image. It might also be affected by psychological factors such as depression over the illness.
Another important aspect of altered self-image is one’s status within their immediate society, family. It might be as the "Bread Winner" or the "Pillar of the Family" which both denote strength. Some patients do not want their "society" to know about their illness; they face their struggle alone leading to isolation and helplessness.
Care should be used to encourage communication between the patient and every member of the care team. Perhaps the patient might find solace in sharing more personally with his/her pharmacist or Client Service Specialist. When significant depression is suspected, the physician should be notified so the appropriate referral can be made. Accommodations may be needed to provide privacy to a patient who prefers not to receive therapy in a family setting. Counseling on self-administration should take body-image into consideration, with tips given to minimize localized side-effects.
8) Disruption to Travel Plans
Travel is an important aspect of the lives of many people. It may be a work requirement to travel daily. For some, it is much needed respite from the disease process itself or the burdensome physical restrictions and medical care associated with an illness. Patients may feel unable to travel due to rigid scheduling imposed by particular medical care entities. Oftentimes, patients miss out on important personal or family celebrations that require travel. This can lead to a feeling of restriction or home-imprisonment.
When possible, in addition to infusion scheduling, accommodations to the therapy might be reasonable to consider. For instance, rather than 5 consecutive infusion days, perhaps when medically advised and tolerated, split the total dose into fewer days, or allow non-consecutive infusion dates. When doses are small enough, perhaps an independent therapy such as subcutaneous self-administration might be considered.
Pharmacists should be notified when doses are missed due to unavoidable travel. For patients traveling with their medication (as in SCIG), the Specialty Pharmacy should advise of airline regulations. They should be provided with proper documentation and temperature restrictions of medications. These care provisions are helpful in facilitating patient adherence to therapy.
9) Safety Concerns in the Home
Some environments may not be suitable or safe for a nurse traveling alone. These concerns have been fully described in a previous NuFactor blog. For the purposes of this blog, patient safety concerns alone will be addressed.
Fear of the unknown may contribute significantly to the associated apprehension felt by a patient. Coupled with misinformation gleaned at times from internet sites, patient anxiety can become excessive. When a patient’s site of care transitions to the home, there are new questions that might arise. They question the ability of the nurse to administer the drug safely and wonder if he/she is well versed in side-effect management and the management of a potential medical crisis.
Thorough individualized assessment of patient risk factors by a specially trained pharmacist is a critical to the infusion referral process. Each patient’s medical and infusion history is taken and reviewed. Risk factors such as multiple allergies, cardiac history, renal insufficiency, thrombosis history, current medications taken or past adverse reactions are noted. A risk-versus-benefit consultation is done with the physician. Medical clearance should be obtained if warranted. Accommodations are made to the infusion plan taking all of these factors into consideration. When prudent, first dosing may be done in a controlled environment to assess tolerance before a patient is transitioned to the home. This is particularly important when a patient is located geographically remote from a hospital emergency room.
A dedicated side effect management plan should be in place. It should include in-depth nurse education and timely reporting of adverse events to the Specialty Pharmacy so appropriate accommodations to therapy are considered. This process should involve the nurse, pharmacist, physician and patient. A nurse should always remain in the home for the entire length of infusion. Patients should be well trained about pre-medications, adequate hydration and communicating side effects to NuFactor and/or their physician.
A working relationship with the Specialty Pharmacy staff from the onset of the referral process is critical to the safe administration of infusion therapies. Client Service Specialists are often trusted advisors. They should be knowledgeable about metrics that determine a safe infusion environment and subtle cues indicative of a potential problem. Communication of these precautions to a patient can significantly diminish patient safety concerns.
10) Healthcare Providers in the Home
When a "stranger" enters one’s home, it is not uncommon for a patient or caregiver to be skeptical, guarded and particularly protective. This is heightened when children are present. Routines are altered. Family discord or intimacy is witnessed by a stranger of sorts. Long infusions are particularly taxing to activities of daily living.
Prior to the arrival of a nurse, many patients have shared dialog with acquaintances that are not always positive. Some patients create a mental image of what the experience will entail days or weeks before the scheduled infusion date, which can add to their concerns and anxiety. Sometimes the physical appearance of the nurse or cultural differences between the patient and nurse do not lineup.
Healthcare staff involved in the provision of home-based care need to be acutely aware and informed of dynamics that could potentially affect outcomes. Patient involvement in nurse selection can assist in making a patient feel less vulnerable in their own home. When requested, or when a patient expresses concern about a nurse being in the home, an interview of the nurse by the patient should be done. A patient should understand that it is possible the first nurse assigned may not be aligned fully with the patient culturally or deemed a perfect fit. Experience with a nurse is the only proper way to consider these factors. Post-infusion follow-up with a patient is very important. A patient should feel secure in the knowledge that honest communication about nursing concerns will be met with decisive action.
Despite the therapeutic benefits, some patients have side-effects to medication. For a patient confused by pre-infusion instructions, adherence to hydration and pre-medication can make side-effects more significant. In extreme cases, adverse events may require hospitalization. Some patients do not fully report symptoms for fear their physician may discontinue the only therapy known to be effective for their disorder. In some cases, associated side-effects may in fact cause the discontinuation, leading to a loss of hope, thinking their disease process will ravish them.
Side effects are best managed through prevention. Education and communication are the best tools we have to prevent or minimize side effects. Each person in the care team including the patient should be armed with the information needed to participate in care. A patient should be told what to do and why it is important. Nurses should be thoroughly trained about specific side effects and the management of them. Nurses should report patient non-adherence and assist in the planning needed to overcome adherence obstacles. Client Services, pharmacists, in-house nursing staff and patients should have protocols in place that facilitate thorough follow-up to address side effects should they happen.
Being therapy experts, pharmacists are invaluable. Careful review of each patient’s history, co-morbidities, medications and risk factors enable them to consult with physicians to develop a plan of care that may prevent side effects. These plans involve therapy accommodations specific to individual needs and may include hydration, fluid restriction, length of infusion, ideal weight consideration, pre-medication or dosing changes. This specialized skill is appreciated by the physician and is often communicated to the patients they treat. While not all side effects can be avoided, patients are often less anxious when they are managed in a rapid, responsive and effective manner.
12) Is the Therapy Effective?
As discussed, the process embarked upon by a patient to receive home infusion therapy is painstaking. There are no guarantees that once started, a therapy will be effective. They wait with great hope that their symptoms will improve. While there is hope during the infusion process, there is also fear that perhaps it will not be effective. With each passing day, it could be an emotional roller-coaster of good days and bad.
When symptoms improve, there is hope. There is joy. For some, improvements continue and they see their health return. For some, improvement may be minimal with initial gains, then none. For others, their disease process does not respond to the therapy and it is discontinued. These patients are particularly vulnerable and despairing. There may be another therapy; will that work? Are the side-effects for that drug more significant? Patients may undergo yet another grieving process.
As any patient chart crosses our desk as a nurse, it is important to remember that each patient is unique. It is our responsibility to learn the specialized psychosocial needs of every patient. We should try to understand all of the emotional ups and downs our patients have been through before we greet them. We should approach each patient with an open mind, especially when their demeanor is off-putting or anxious in nature.
Nurses are on the front line. We can make significant contributions to a patient’s emotional well-being through education, conversation, well-informed nursing practice and surveillance. Frequent communication with the Specialty Pharmacy team is critical and allows for adaptations to care that ultimately translate to better outcomes.