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.