Exploring healthcare during a pandemic

Like I’ve mentioned in a few of my previous posts, this pandemic has brought on a lot of changes for everyone– but there is variation in how COVID-19 has impacted different groups of people. The experience of racial and ethnic minorities during this pandemic has been very different from other groups and is reflective of health outcomes that often exist for minorities in the U.S.

COVID-19

In New York City, the death rates for Black/African American individuals is much higher due to the virus, than it is for other racial/ethnic groups (1). The chart below shows the disproportionality of the effects of COVID on the population of African American individuals in a few states. 

Compared to the total state population, the majority of patients affected by COVID are African American (2).

These disparities exist not only during this pandemic, but in healthcare in general:

Reasons for the Disparity

People who belong to racial or ethnic minority groups experience the health care system differently than others– many of the existing disparities in society lead to poorer health outcomes, as well as greater vulnerability to viruses and other illnesses. Many minority groups live in heavily populated areas or live in households with multiple generations, where social distancing might not be possible (1). Many work hourly, so health benefits are not part of the package and health services become difficult to access (2). There is also a much higher population of racial and ethnic minorities in jails, prisons, etc. which are again, places that increase the risk of spread of viruses and other illnesses (1).

Also, because of the social distancing measures that have to be taken because of the pandemic, there has been a decrease in quality of care for patients who don’t speak English (4). Before, interpreters/translators could be present in person during a patient’s visit, which makes it much easier to translate and understand the patient’s concerns and symptoms. Now, a lot of interpreters have to work over the phone and it’s possible that a lot of information is getting lost in translation because it’s just harder to have a conversation and understand each other that way.

While the pandemic has affected everyone in one way or another, it has not affected everyone equally. The social determinants of health that I talked about in my first blog, in addition to factors such as racism, geographic location, and poverty, play a large part in deciding how an individual is affected. Unfortunately, the same level and quality of healthcare are not available to every person. Moving towards a system that addresses these disparities and provides excellent health care to each patient will involve first resolving the inequalities that exist in health care delivery in general and access to healthier food, exercise, etc. Additionally, training healthcare providers to better understand cultural differences and barriers to care could improve health outcomes for minority groups (3).

The pandemic has undoubtedly had an effect on everyone’s lives– whether that’s in the form of switching to online classes, undergoing stress and responsibility at work, dealing with the effects of the virus first hand as an essential worker, experiencing the consequences of social distancing on mental health, coping with the loss of loved ones, and more.

Albany’s Response to COVID-19

In previous weeks, the Albany area has followed social distancing measures laid out by Governor Andrew Cuomo. Schools are closed until the end of the academic year (and summer classes will be done remotely as well), and all non-essential businesses, such as gyms and hair salons, have also been closed (1). Additionally, all hospitals in New York were asked to cancel elective procedures and increase the number of beds, as coronavirus cases were growing (2). To assist all of the families that are experiencing financial hardship since many have lost their sources of income, $200 million in food assistance was also made available (2). 

In Albany, mobile testing sites have been made available throughout the week. I think this can be especially helpful for people that might not be able to travel far to get tested if they have symptoms. More information about the specific days/location/times that testing is available can be found here.

Getting Back to “Normal”

Governor Cuomo has announced a 4-phase plan of reopening New York. I’ve included an image summarizing the main reopenings in each phase. The guidelines for deciding to open a region in NY again are here.

As of May 20th, the Capital District, which includes Albany, has started Phase 1 of reopening New York.

For a lot of us, I think it can be relieving to hear that we are going back to “normal,” but it’s important to not take advantage of the reopening and stop practicing social distancing altogether. For all of the work that healthcare providers, government officials, and the general public has done to decrease the spread of the virus, staying safe and healthy and keeping others safe will still be important. I’m not sure what the new “normal” will look like, but I hope that as we start reopening, that the stress on healthcare workers, on families that are experiencing loss and financial hardship, and on everyone going through a hard time, will be alleviated soon. How do you think your community will have changed after the pandemic?

Even in healthcare settings, death is (understandably) really uncomfortable to talk about. Most of us don’t want to think about our own death, let alone that of our loved ones. It’s hard– but that’s what makes these conversations so important to have in advance.

End of life care can be very stressful for both patients and families. Having conversations about wishes for end of life care now can make this difficult time a little less stressful later. With the current pandemic, a lot of people aren’t even able to have their family around them, which I think we can all agree sounds even more difficult.

Care for Terminally Ill Patients

One of the most important things you can do, even if you are healthy right now, is to fill out advance directives. You can find New York’s here, and every other state’s here. These forms basically document your wishes about end of life care– what you would want in the event you can’t speak for yourself, who can make decisions about your healthcare, etc. While it can be really hard to fill these out and think about a time when they might need to be used, completing them and knowing that neither yourself or your family will be burdened with stressful decision-making is worth taking the time.

When patients are in the last few months of life, hospice is one of the options available to them. In Albany, the Community Hospice provides hospice services to patients at home, in nursing facilities, and also in St. Peter’s hospital at the Hospice Inn.

Visiting Angels is another option for in-home care, especially for people who want to remain as independent as possible. You can schedule visits and create a care plan to help with daily activities, providing company, and helping with meals and medications.

There are a couple more end of life care options that I have listed on a separate post here.

Supporting Caregivers

Caregiver burden can really affect the health of family caregivers and also patients. It’s important that caregivers get the support and relief they need when caring for a loved one– here are some resources in Albany for caregiver support, including a support group. Having been a caregiver myself, I know it can be really relieving to talk to people that have or are experiencing similar stresses.

Caregiving during a pandemic can be even more difficult– the CDC has listed some helpful tips for caregiving at this time to try and prepare for staying at home for a longer period of time. If you are caregiving for someone, it’s important to check in with yourself from time to time and recognize when you need a break. It can be really hard to ask for help, but doing it all alone also gets really overwhelming really fast. On the other hand, if you know someone that is a caregiver, make sure you take some time to ask them if they need anything (picking up medications, groceries) and what you can do to help.

While end of life care has always been a part of healthcare, I think this pandemic has increased awareness of its importance and brought it to everyone’s attention a little more. These conversations and experiences will always be difficult, but thankfully there are some resources that can help make sure patients and families receive support as they go through it.

Caring for diverse patient populations presents a lot of new and unique challenges for patients, providers, and family members. This week, I’m going to focus on one patient population in particular: Individuals with intellectual and developmental disabilities (IDD).

Throughout college, I have volunteered with and have been a peer mentor for the Best Buddies chapter at Union College. Best Buddies is a non-profit organization that strives to support individuals with IDD by providing them with one-on-one friendships, employment opportunities, development of leadership and communication skills, and self-advocacy skills. Being a part of Best Buddies has been a very rewarding experience, and has also shown me some of the challenges that individuals with IDD face everyday.

Challenges

One of the challenges that individuals with IDD face is communication. Often times, they can have difficulty communicating effectively with others, which can prevent them from being able to express their thoughts and feelings to family members, friends, or even healthcare providers.

Integration into society and employment are also two major challenges (1). Many individuals do not have a post-secondary education and aren’t able to access resources that would allow them to obtain internships or other experiences. Additionally, the stigma that exists surrounding intellectual and developmental disabilities can lead to social isolation and negative perceptions of hiring individuals with IDD.

These challenges and more combine to leave individuals with IDD with increased mental health problems, little to no income, and lower levels of independence (1).

Role of Caregivers & Healthcare for Individuals with IDD

Many individuals with IDD live with their families and rely on them for financial and emotional support, as well as advocacy. However, there is not always enough support for families that are caring for individuals with IDD. Many families are expected to provide lifelong care, but this is not feasible in some situations and extra support is needed (2). In Albany, St. Margaret’s Center provides 24-hour care and support for children with disabilities. This includes pediatric care, group activities, and helping families navigate insurance and other services. This is a very helpful option for families of younger children with disabilities, and it would be great to see similar resources for adults with IDD that face some of the same challenges.

In healthcare settings, the challenges faced by individuals with IDD can lead to poorer health outcomes, even with advocacy by caregivers. Individuals with IDD face higher rates of co-morbidities and chronic conditions, as well as challenges in understanding their own healthcare issues and the services that are available to them. A lot of providers don’t receive enough training and don’t have experience in communicating with and caring for individuals with IDD (3).

Resources

Some additional resources for individuals with IDD, such as this Early Intervention Program in New York, are listed here.

While there are a lot of improvements to be made in supporting individuals with IDD and their caregivers, we can start by understanding the unique challenges this population faces and how these challenges create barriers to integration and care.

Access to healthcare can be determined by several factors (i.e. geographical location, income, insurance)–being an immigrant, especially a recent immigrant to the U.S., is one of these factors. In Albany, NY, the immigrant population has grown over the past few years and currently, 13.2% of the population consists of individuals that were not born in the U.S. (1). Coming to a new country presents many unique challenges, but access to healthcare is one that can prevent individuals from adjusting well and living a safe and healthy lifestyle.

Health Insurance

Due to their lack of citizenship after first moving to the U.S., health insurance options can be limited for immigrants, especially for undocumented immigrants (2). This limits access to many providers who only accept patients with insurance, and while undocumented immigrants can sometimes receive care from community health centers, this care is often only basic primary care or to be used in emergencies (2).

In New York state, all children can receive the Child Health Plus plan, regardless of their immigration status. This plan is comprehensive and includes preventative care, well-child visits, and emergency services (3). Additionally, pregnant women can receive Medicaid regardless of immigration status and some documented immigrants may qualify for the Essential Plan soon after they move to NY (2). However, if an individual does not fit into these categories, the only services that an undocumented immigrant may receive are emergency services (2). While this is beneficial, it leaves out the preventative care and services that can treat symptoms before they worsen beyond control.

Translation Services & Health Literacy

Many immigrant families, especially when they first immigrate to the U.S., are considered to have low English proficiency (LEP). This makes communication in healthcare settings a challenge and can be a barrier to receiving quality care, as the patient and provider cannot have a direct, fluid conversation. Some health care settings in New York have put up this ‘Language Identification Tool Poster’ that allows patients to point to their language, so that appropriate translation services may be provided.  A portion of the poster is shown below, with a link to the full poster here:

While resources such as this poster can help, patients and providers would still not be able to speak directly to each other, and would only be able to communicate through a translator.

Additionally, understanding health insurance options can also be difficult when there is a language barrier, as there are different requirements for each plan. A search engine can be found here for in-person help. This search engine consists of a directory of in-person helpers that can assist individuals in navigating the health system and health insurance plans specifically. While only eight languages are supported, including English, this service can benefit some individuals in understanding how to receive health services for themselves and their families.

COVID-19

With the current pandemic, language barriers present a unique challenge in being able to transmit public health information clearly to the general population. As immigrants make up a large portion of the population, it is essential that they understand basic information about the virus and are able to practice appropriate measures to limit the spread of the virus. Valleywise Health Medical Center in Arizona has made a series of videos available on Youtube that describe what COVID-19 is and what to do if you are sick. These videos have been made available in 12 languages, one of which can be played below.

These videos can be incredibly helpful for individuals that may not understand what is happening in their local communities as a result the virus, but coming across these videos may not be common for many immigrants, as they require some searching. It would therefore be helpful for similar resources and information to be sent to or made available to local communities, either in the style of videos or in pamphlet form.

While many resources exist to help immigrants navigate the healthcare system and obtain information about resources, these resources are not always used or made readily available to immigrant families. Many require searching and prior knowledge about websites and organizations that usually provide public health, insurance, and language services. In the future, it would be important to ensure that immigrants are aware of the resources that exist so that they can have access to the healthcare that they might need. What are some ways this could be done?