There is a notion that “end of life” means imminent death. But for most of us, death does not happen abruptly. Whether related to age or disease, a person’s ability to maintain activities of daily living usually declines over time. This could happen over years, months, or weeks. Each time period requires adaptation of the new normal.

If a person hasn’t taken time to think about and discuss these changes, the reaction is often to deny the change and fight to regain the old normal. This sets them up for pain and suffering because they can’t go back to their previous state indefinitely. There are resources available to help make these adjustments easier. 

Doctors & Clergy Members

When planning to discuss health and major life decisions, many people reach out to their healthcare provider or religious/spiritual advisor. But these professionals may be ill-equipped to counsel on end of life. Healthcare providers work in a system devised to keep people healthy, to maintain optimal functioning. Although advances have been made, there is still a level of discomfort surrounding the discussion of death. Many providers don’t know how to guide patients through end of life.

Religious and spiritual advisors help direct people to live a good life, teaching them how to assure a place in heaven or receive some other reward. Sadly, for some, their education didn’t include training about how to help people find peace and satisfaction at the end of their life.

How much is too much?

With a lack of resources for a meaningful dialogue about an end of life plan, another issue arises: over-treatment.

Over-treatment in the United States has become the standard of care. In her book, Finish Strong, author Barbara Coombs Lee, healthcare clinician, policy maker, advocate and president of Compassion and Choices outlines six reasons for over-treatment.

1. Financial gain. The main reason for over-treatment in the US is the current fee-for-service model. Providers are paid to perform tests, procedures and surgeries, not to cure disease or maintain health. It is not a matter of greed or conspiracy on the part of the provider. It is the inevitable result of this type of system.
   
2. Providers are reluctant to deliver bad news. Providers may feel a personal sense of failure when explaining that treatments aren’t working. This often prompts them to suggest other treatments. These treatments often lead to a decrease in the person’s quality of life or may inadvertently shorten their life because of side effects. When more technology is introduced into patient care, hands-on medicine decreases. The farther away a provider gets from the patient, the less comfortable they are looking the person in the eye to tell them that their life is ending. Studies reveal that healthcare providers experience feelings of profound grief, sadness, self doubt, failure and powerlessness when treatments fail and death is inevitable.

3. Patient and family expectations. There is a notion that we can abuse our bodies for a lifetime with poor diet, dangerous behaviors, addictions, lack of exercise, and expect — almost demand — that our doctor fix us with a magic pill or a silver-lining procedure or surgery. These do not exist but that doesn’t stop patients and families from imploring providers to “do everything you can,” “try something else,” or “spare no expense.”

Providers are not magicians and they certainly are not God. There is a limit to what the body can tolerate. We all come with an expiration date. The sad part about “doing everything” is that the majority of the time, the intervention causes pain and suffering. It robs the patient of enjoyment and quality time to say important things while loving those around them. In trying to save them, the precious time they have left is stolen.

4. Technology. In our country, many people think that just because technology is available, it must be used. When a patient hears that there is another machine available to perform a different test or procedure, they want to use it. That is not an inherently bad thing. The problem arises when no one questions why it’s being used, what the potential outcome is going to be, and if it may lead to further tests and procedures. Every case is different but this should be discussed at a level that the patient and family can understand.

5. Fear of lawsuits. A national physicians survey conducted in 2010 by Jackson Healthcare found that 73% of doctors say they order more tests, procedures, and treatments than are medically necessary in an effort to prevent lawsuits. Providers would rather do more than be accused of not doing enough. They don’t want to risk a lawsuit and an accusation of malpractice. According to a 2014 Gallup poll of healthcare executives, the financial impact of defensive medicine is about $650 – $850B a year.

6. Palliative care/hospice care equals giving up. Our current system requires a patient to stop curative treatment in order to receive hospice care. The main focus in both palliative and hospice care is comfort. Palliative care (treatments aimed at providing comfort and quality of life) can co-exist with curative care but Medicare does not pay for it, at least not yet. Hospice care requires an end to most curative treatments with a few exceptions and Medicare pays for it. 

Studies prove the benefit of a dual approach to patient care. In a 2010 study, 151 cancer patients were randomly assigned to standard treatments alone or standard treatments with early access to comfort care. The group that was given both standard and palliative care as their disease progressed was less likely to choose aggressive treatment such as 3rd and 4th rounds of chemotherapy or admission to the ICU. They actually lived an average of three months longer than the standard group and they reported better quality of life.

Start the conversation with these documents.

There are resources available to help you have important conversations and create legal documents detailing your end of life wishes. You can find these documents online or obtain them from your local hospital or hospice provider.

Five Wishes. This is a legal document that helps people consider and document how they want to be cared for at the end of life. It states what life-sustaining treatment the person desires as well as what they don’t want. It names the person who will make decisions when they are no longer able. It also documents how and where they die. For example, they may wish to die at home with their favorite music playing and a special aromatherapy scent in the air. The document lists who you want to be present at the time of death. People may write their own obituary and dictate what their funeral or body disposition plans are. This form needs to be signed by two witnesses who are over 18 years old and will not benefit from the person’s death. 

MOLST: The Maryland Order of Life-Sustaining Treatment. This is a legal document and a physician’s order signed by a medical provider. Most people discuss this with their primary care provider and have them sign it, but it can be signed by any licensed provider. It details what life-sustaining treatment and procedures you want and those you don’t. It identifies your decision maker when you are no longer capable of making the decisions. This document is different because it is a signed order and it only addresses medical issues.

Keep the completed document in a safe place in your home. Some people keep it in the freezer in a Ziploc bag so that if you need transport by EMT to hospital, the document is there and first responders can be made aware of your wishes. Without a MOLST, by law, healthcare providers must do everything possible to keep you alive even if that isn’t what you want. 

Advanced Directive. This legal document states your end of life medical wishes and names your decision maker. There is a section for funeral and after-death body disposition plans. This document needs to be signed by two witnesses over 18 who will not benefit from your death.

Legal Documents Protect You

All of these resources are legal documents. Only the MOLST is a signed order by a medical provider and must be followed. It is the only document that EMT responders will adhere to because in most emergencies there is no time to debate the meaning of a statement. 

Make multiple copies and give them to your medical provider, your family members, your decision maker (healthcare proxy), hospital, nursing home, and back-up decision maker.

Update the documents periodically to reflect your current condition and your feelings about the types of intervention you desire. It’s important to remember that these documents ONLY come in to play when you are no longer capable of speaking for yourself. You can change your mind and submit a new document at any time. Make sure to give healthcare providers the updated version.

To learn more about end of life planning, check out The Conversation Project, Compassion and Choices and Respecting Choices. To talk with an experienced hospice nurse, contact me at Connecting the Dots in Healthcare at 443-786-0873 or email dorothyamayorga@gmail.com.

Dot Mayorga has been a nurse over 20 years serving the residents in Caroline, Dorchester, Talbot and Queen Aanes counties. She has worked as a medical- surgical nurse in Easton Memorial Hospital, a case manager Home Health, Hospice nurse with Shore Health, and Wound Care nurse with Shore Regional Health System. She currently is a triage nurse with Choptank Community Health Services.

 

The combination of colder weather, more indoor living, and widespread exhaustion with preventive measures such as masks and social distancing is fueling an explosive third wave of the virus. Infections, hospitalizations, and deaths are rising very rapidly across the U.S. So far, however, the Eastern Shore is a pretty safe place to be. Compared to North Dakota’s incidence of 171 cases per 100,000 people (highest in the U.S.), Maryland overall has just 24 cases/100k as of November 14. The Mid-Shore counties were lower still: Queen Anne 16.7; Kent 11; Caroline 10.3; Talbot 8.1 (all per 100k of population).  Because populations are small, these numbers don’t translate into lots of cases: Kent, for example, is seeing about 2 new cases a day.  

Still, things are likely to get considerably worse nationally over the next several months, if medical experts like Dr. Fauci are right. Numbers of new infections are rising even on the Eastern Shore. And vaccines won’t be available for most people until sometime next spring or summer, because health workers and first responders and possibly nursing home residents or other extremely vulnerable people are likely to have first priority. So the pandemic will likely get much worse before it gets better. To complicate matters, it’s also flu season, with overlapping symptoms making it initially hard to know what a fever or congested breathing really mean. As a result, gathering the family for Thanksgiving or Christmas holidays or New Year’s celebrations comes with higher risks—especially if some of those gathering come from places with higher Covid prevalence. 

The good news is that testing is both more available and, soon, more convenient—even something you can do yourself at home, quickly and privately, like a pregnancy test. There are several kinds of tests, which differ in what they measure, accuracy, speed of results, and costs. So let’s sort them out and clarify the technical terms:

• PCR test, which stands for polymerase chain reaction, is the gold standard for covid testing. It make millions of copies of any virus genetic material found in a test sample (usually collected with a nasal swab), allowing it to be sequenced and identified. The testing process, however, requires sophisticated laboratory equipment and usually takes several days for the sample to be sent to a lab and analyzed. It’s not cheap if you have to pay for it yourself.
• Antibody tests, which are blood proteins generated by your body’s immune system to defend against a virus infection. However, it usually takes several weeks after infection for detectable levels of covid antibodies to show up in your blood, so while this test can confirm that you were infected, it’s not useful to detect a live infection, especially early on when a person is most likely to spread the disease to another. 
• Antigen tests, which detect a viral particle or other foreign agent that can stimulate an immune response. These tests are inexpensive, can be analyzed very rapidly, and do not require complex laboratory equipment, but they have lower accuracy than PCR tests. Nonetheless, they are especially useful in the early days of an infection, and for testing people who are infected but have no symptoms. 

Several companies including major laboratory chains like Quest will send you a sample collection kit for a PCR test, which you collect at home and mail to the laboratory for testing; but it takes several days and may not be covered by insurance. Public health agencies also offer PCR tests. More convenient are rapid Antigen tests that give answers in about 15 minutes being manufactured by major companies such as Abbott and Roche. Antigen test kits for use at home by smaller companies such as Cellex and Orasure are still in process of being certified by the U.S. Food and Drug Administration; they will give you an immediate result and promise to be inexpensive. In principle, family members gathering for a holiday or business colleagues that wanted a face-to-face meeting could pre-test themselves, providing an additional layer of safety. These are also useful for healthcare workers, or for student populations, that need to be tested frequently.

But tests aside, the core measures to protect yourself and your loved ones remain the behavioral safety measures: wear masks, avoid crowded indoor situations, wash your hands.  

Al Hammond was trained as a scientist (Stanford, Harvard) but became a distinguished science journalist, reporting for Science (a leading scientific journal) and many other technical and popular magazines and on a daily radio program for CBS. He subsequently founded and served as editor-in-chief for 4 national science-related publications as well as editor-in-chief for the United Nation’s bi-annual environmental report. More recently, he has written, edited, or contributed to many national assessments of scientific research for federal science agencies. Dr. Hammond makes his home in Chestertown on Maryland’s Eastern Shore.

 

The “topping off” of University of Maryland Shore Medical Campus at Cambridge on Monday, September 20, 2020 marked an important milestone in the construction progress for UM Shore Regional Health’s state of the art, freestanding medical facility that will serve Dorchester County and the surrounding area. While the COVID-19 pandemic precluded a traditional public celebration for the topping off, during the previous week, an open house invitation from UM Shore Regional Health to the community enabled scores of community leaders and local residents to come to the construction site to sign the facility’s top beam before it was lifted into place.

On schedule for construction completion in summer 2021 with an opening date scheduled for mid-September, the new UM Shore Medical Campus, located at Cambridge Marketplace on Route 50 at Woods Road, will house a 39,000 square foot emergency care center with an adjacent helipad and a wide array of outpatient care, including physician offices, diagnostic and rehabilitation services, to the citizens of Dorchester County.

According to UM SRH President and CEO Ken Kozel, the Cambridge project is the culmination of intensive collaboration between health care leaders, local community members, state and county government officials and physicians. “I am so grateful to everyone who has worked with UM Shore Regional Health and University of Maryland Medical System to help us make our vision for the future of health care in Dorchester County come to life,” he said.

Keith McMahan, UM SRH Board chair, noted that UM Shore Medical Campus at Cambridge is the latest in a series of major health care facility construction and renovation projects dating back to 2010. These include UM Shore Emergency Center at Queenstown, UM Shore Medical Center at Chestertown Emergency Department, the Clark Comprehensive Breast Center and the Diagnostic and Imaging Center, and UM Shore Medical Pavilions at Cambridge, Chestertown, Denton and Easton.

“Now it is Dorchester County’s turn, as we celebrate the real progress being made in the construction of University of Maryland Shore Medical Campus at Cambridge,” said McMahan. “The completion of the of this comprehensive, state of the art health care facility will further realize Shore Regional Health’s goal of providing quality health care, close to home, for residents of Caroline, Dorchester, Kent, Queen Anne’s and Talbot counties.”