5 Steps to Make the Healthcare System Work for You

At my first bereavement group, grieving spouses recounted heart-wrenching tales full of tears, anger, regret, and loneliness. Their spouses died in hospitals, with medical personnel trying to work miracles right up to the bitter end. They had not even been in the room with their loved ones at the moment of death. They did not feel good about their spouses’ medical care or their hospital experiences. 

I was stunned to learn how different our experience had been. When my husband, Bruce, was dying from aggressive esophageal cancer, he took control of his healthcare decisions. Treated by a caring and supportive medical team, and surrounded by his loving family and friends, Bruce died peacefully, free of fear and regrets.

I learned 5 powerful steps that you can take to make the healthcare system work for you or someone you love at end-of-life.

1. Assemble the right medical team

Healthcare providers play a critical role in achieving end-of-life goals. Clinical expertise is essential but a compatible style is also important. Do you want to have all the details about your condition and treatment and have a say in every decision? Do you want to know how quickly a terminal illness is progressing or know how long you’re likely to live? Your physician’s manner should match your desire for honesty and forthrightness.

Some doctors are uncomfortable letting a patient die without trying everything possible. Your physicians need to advocate for you in a healthcare system that often sees patient death as a failure. A willingness to support your end-of-life wishes is critical at a time when treatment decisions can make the difference between dying in a hospital and dying at home.

2. Create advance directives to guide healthcare decisions

An advance directive clearly states your wishes for end-of-life, including your preferences for medical care. It will guide decisions doctors and caregivers make if you are terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life, thereby reducing confusion or disagreement about the choices you would want people to make on your behalf.

Appointing a healthcare proxy authorizes someone to make decisions on your behalf if you are incapacitated. If you have not chosen someone who understands and shares your goals and values, or who is not strong enough to follow through on them, then your wishes may not be followed.

Although these are legal documents, they do not require a lawyer and forms are available online. These documents are helpful but it is also essential that you discuss your wishes with your healthcare team and healthcare proxy. By planning ahead, you can get the medical care you want, avoid unnecessary suffering and relieve caregivers of decision-making burdens during moments of crisis or grief. 

3. Embrace the powerful role you must play

By assembling the right medical team, you will have surrounded yourself with experts, but only you can make decisions to accept or decline treatments. When my husband Bruce was faced with a recommendation for invasive prophylactic therapy, we thoroughly researched it and aggressively questioned the specialist. Bruce ultimately decided to go forward with it. But when the most powerful chemotherapy did not result in lasting remission he declined further treatment.

4. Understand your diagnosis and prognosis

You can’t make the right decisions if you don’t have the best information. A thorough, detailed and factual understanding of what you’re facing will lead you to what’s best. Not fully understanding your prognosis or failing to act on it can prolong inappropriate treatments.

5. Recognize when to transition from “being sick” to “dying”

Bruce confronted the odds against additional chemotherapy leading to lasting remission. Weighing that against the pain of a treatment that would confine him to home as the poison weakened his body, he chose to stop “being sick” and hoping for a cure. Once he acknowledged he was dying, he could focus on making the time left as joyous and celebratory as possible.  

Explicitly assuming the “dying” role can be critical to achieving peace at the end, allowing an opportunity to settle things before it’s too late, engaging hospice, achieving a sense that your life is complete and achieving closure for everyone. He was not giving up medical care but refocusing care. Learning what treatment could be given at home, what treatment required hospitalization, and the processes by which the body and soul prepare for death, along with the right physician, helped us through this transition.

Bruce’s fight against cancer took place in a medical system that can be complex, confusing, and frightening. We may get too much, too little or the wrong kind of healthcare. Doctors are trained to fix what ails us but there may come a time when the elusive cure is worse than the disease. Bruce chose to take control of his end-of-life journey. He was able to die at home surrounded by his loving family, having fully lived his life right up until the end. Those last months were some of the most celebratory, peaceful, and intimate we had shared during our forty-six years together.