Photo: American Academy of Hospice and Palliative Medicine
A 2019 survey by the Assistant Secretary for Planning and Evaluation’s Office of Health Policy found that the highest rates of telehealth visits were among those with Medicaid (29.3%) and Medicare (27.4%), Black individuals (26.8%), and those earning less than $25,000 (26.7%).
With so many of the nation’s underserved patients using telehealth services, practitioners and medical organizations must work to understand what these patients need in order to improve the quality of care.
Telehealth and its necessity have been a hot-button topic in healthcare discussions since the care modality went mainstream during the pandemic. Dr. Holly Yang is the board president of the American Academy of Hospice and Palliative Medicine (AAHPM) and a strong advocate for telehealth and the good it can do in the hospice and palliative care communities.
We interviewed Yang to discuss bringing telemedicine to the nation’s underserved, as well as other related social determinants of health and health equity issues.
Q. What is the importance of meeting patients’ and their families’ care needs with attention to their abilities and restrictions, including financial ability, transportation and location?
A. Many people in the United States still struggle to access healthcare. In some areas of the country, hospitals and clinics are closing, and people travel long distances to get in-person care. Even in areas that have healthcare nearby, some people don’t have the means or physical ability to get to their healthcare provider.
Family members unable to take time away from work to accompany them, or lack of access to a car or public transportation creates additional barriers to care. Many families are juggling care for their children and their parents, making it a challenge to navigate everyone’s schedules, much less meet everyone’s healthcare needs.
For those with serious illness, these issues are compounded as they require more frequent medical care for evaluation and treatment.
People with serious illness often are dealing with multiple healthcare providers and multiple medications that need refilling at different times with changing doses. They also may need other services like lab tests, intravenous treatments or physical therapy.
The increased frequency and extent of healthcare services needed when diagnosed with a serious illness occurs at a time when people are less able to deal with it by themselves, even in the best of circumstances, as they may be more tired, have more symptoms like pain or shortness of breath, and have less ability to walk or may need assisted devices.
Even with good healthcare coverage, all of these treatments and accommodations are costly – from copays, out-of-pocket expenses and lost income from missed work. Financial toxicity is a well-known source of additional stress during what is already a difficult time.
People with fewer financial resources, from rural areas, from historically marginalized communities, who are non-English speaking, or who do not have family or friends nearby, all face even greater challenges.
Removing these barriers to healthcare makes a world of difference in helping each person live well despite their medical conditions. Patients with serious illness and their families live better and have less stress when their care is coordinated. Attention to social, practical and financial factors, in addition to their medical, psychological and existential concerns, results in better outcomes.
This tailored, individualized approach is one of the reasons I love being a hospice and palliative medicine physician. I get to work with a team of expert clinicians who treat each person with serious illness as an individual, and partner with them and their families to figure out the best way to get them the care that they need.
For some patients, inpatient palliative care is delivered in the hospital or emergency department and focused on acute symptom control and making sure we know what patients want from their healthcare experience. For others, ongoing, individualized care is delivered in outpatient palliative care clinics or through telemedicine focused on their symptoms and emotional, spiritual and practical concerns.
Throughout this, they continue their disease-directed or even curative treatments with their healthcare team. Some patients for whom mobility is an issue get their palliative care through a home-based palliative care team that comes to them in person and virtually.
For people who are dealing with a terminal illness near the end of life, hospice care has always been about bringing compassionate care to the patient and their family, making sure that care is based on their values and focuses on making each day the best possible.
By tailoring each person’s healthcare to what they and their family need, it reduces stress and helps us deliver on the promise of high-quality healthcare no matter the age, disease or prognosis.
Q. How is telehealth an accessible and equitable care option for patients and their families and how can healthcare provider organizations promote this?
A. Telehealth has been a game changer in that there has been added flexibility for patients and families. While access to broadband is not ubiquitous or equitable yet, the increase in telehealth because of the changes in technology, reimbursement and culture brought about by the pandemic has allowed more people to get care more quickly and with less stress.
For patients who receive palliative care, the option to have some of their visits by telehealth has made life much easier. For hospice patients where care has always traveled to the patient, it can allow a clinician to see a patient more quickly when needed for unexpected symptoms. In areas where there is less access to specialty-trained hospice and palliative medicine physicians, telehealth can allow virtual consultation to help patients and their local healthcare providers.
As COVID has become endemic, and special emergency provisions in prescribing, billing and regulation of clinical practice are coming to an end, healthcare provider organizations should be thoughtful about what worked well for patients and clinicians.
Those flexibilities that have allowed us to deliver care in innovative ways are being critically evaluated, and the things that have allowed patients to get safe, high-quality care that is more equitable and less stressful should be continued. Healthcare organizations, clinicians, and patients and families alike should advocate for making some of these telehealth changes permanent, which allow better access to high-quality care.
An example of something that has worked well for patients who get outpatient palliative care is that they could be seen virtually in their home rather than travel to a clinic. Regardless of living in a rural area or a city, decreasing the burden of travel to get care when a patient with serious illness is fatigued or in pain and caregivers are stressed has been critical.
Allowing physicians and other healthcare providers to decide when they medically need to see the patient in-person and allowing the prescription of controlled medications for pain and other symptoms for these virtual patients has made a big difference.
For patients who don’t have access to high-speed internet, a smartphone or a family member who is tech savvy, audio-only phone visits have been an important way to deliver care in a more equitable way. Importantly, parity of payment for these virtual visits has allowed healthcare organizations and clinicians to provide this care.
As in this example, rules around care delivery, prescribing and reimbursement are intertwined and require input from a variety of stakeholders and coalition building to make sure the changes in healthcare through telehealth continue to serve patients, and that issues of equity are addressed.
Q. What is the importance of patient autonomy when setting and evaluating a patient’s goals of care, and how does telehealth fit in with tailored, high-quality care from providers?
A. People want healthcare that fits their life and gets them the best outcomes possible. This is even more important when dealing with serious illness and the stresses that accompany it. Autonomy is important, and being able to choose allows people a sense of control and improves their wellbeing.
When dealing with a serious illness and talking to people about their goals, clinicians can provide patients and families the expertise on the disease and what is medically possible. Patients and families are the experts in who they are and what is important to them. Through this process of shared decision making, patients have the most autonomy to choose a plan of care that is realistic and fits what is important to them.
The rapid growth of telehealth during the pandemic has allowed easier access to clinicians, and smartphones and other devices have allowed people to connect with family by video more easily for some time.
Being able to discuss goals in-person with the addition of important people virtually, or completely virtually, has created opportunities for more diverse questions to be asked, multiple voices to be heard, and allows better understanding all around, which allows for better surrogate decision making if and when needed so the patient’s voice always is heard.
Telehealth is here to stay and making sure it evolves to continue to fit the needs of seriously ill patients and families of all backgrounds will be our next important challenge.
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