THE BLOG
12/09/2013 06:10 pm ET Updated Feb 08, 2014

A Family's Struggle: Dealing With End of Life

Most weeks, I discuss matters of heart health. This week, I turn the spotlight on something closer to my heart: the end-of-life care for my mother. I offer the lessons my family learned the hard way and suggestions for anyone who is - or could be - facing similar challenges. As families gather for the holidays, perhaps some are facing difficult circumstances, and this may be an opportune moment for these types of discussions.

When my mother was diagnosed with breast cancer in 2003, she downplayed the severity in words and deeds. After undergoing a lumpectomy and radiation, she returned to her regular routine, only occasionally discussing her health and always indicating that all was back to normal.

Nothing could have been farther from the truth. Her cancer was spreading, and she knew it. Yet she felt it best not to trouble her children with these developments. It wasn't until Christmas 2010 that it became clear that her situation was worsening as my spry, energetic mother for once seemed her age.

Two weeks after spending a wonderful holiday together, she became short of breath and was taken to the hospital, where she fell and broke her hip. As the family gathered, we learned about the significance of her health challenges, and during the surgery to repair her hip, we learned about the additional spread of her cancer.

From the hospital to her transition into a rehabilitation facility, my entire family -- including my mother -- understandably focused on how to improve her health so she could go home. The problem, however, was what didn't happen. We didn't seize this moment to talk about what she was facing.

While her doctors were our partners in talking about her rehabilitation and plans to transition back to home, these outstanding medical professionals didn't discuss with us the severity of her cancer or her prognosis. Furthermore, there was no coordinated approach among the many medical staff caring for her in the hospital, the extended care facility and in her doctors' offices.

Though her last few months included moments of great joy -- times when reminiscing unleashed laughter, masking the pain we all felt -- I also realize now that my family was focused on an outcome that was unlikely. Even now, almost three years later, I question my actions. I still ask myself why I didn't spend more time asking her what she wanted, why I didn't initiate more frank discussions with her doctors, and why I didn't ask more questions when she was given chemotherapy and blood transfusions just weeks before she died, significantly reducing her quality of life in her final days.

I'm also saddened by the realization that so many families endure a similar experience. Because few of us are prepared to navigate the many obstacles that present themselves, I'm sharing my experiences in hopes that it will help you or someone you love, should the situation arise. Most of all, I wish for the systemic changes that will make it standard for everyone to receive the most informed, compassionate care possible.

  1. A multidisciplinary team of health care professionals -- Patients and families need experts from a variety of fields bringing their own unique expertise to support the patient and family. It's not enough for them all to be working toward the same goal; they also must work in harmony.
    • The team leader should be someone capable of guiding a family through the very uncomfortable first discussion of a patient's prognosis. Such a person can ask -- and answer -- many questions that patients and their families should ask, but may not because they are so overwhelmed.
    • It's also important to have a team member who can help the family handle the various emotions they feel; in my family, this included a lack of acceptance, guilt, grief, denial and anger. If untreated, such emotions can interfere with effective communication and decision-making.
    • Lastly, an experienced, guiding hand is needed to explain the importance of discussing the patient's preferences for life-prolonging therapy and end-of-life care, and methods for documenting them long before they are unable to make those decisions for themselves.

  2. Emphasize the "team" aspect -- Make sure your health care providers work together and communicate, each knowing what the other is doing, when and why. They must remain coordinated so that care and information flows seamlessly among all members.
  3. Plan to make the end as comfortable as possible -- Seek health care professionals who put a priority on symptom and pain control. This is what my mother needed most in her last days.

The right care is out there. In fact, the availability of services related to advanced illnesses is on the rise. But you may have to work to find it. The American Heart Association helps anyone dealing with heart disease and stroke. Every day, we serve countless patients and caregivers, providing the information and guidance to reduce their suffering and provide them with the highest quality of life possible. That is why we are working to address this issue, and it's why we collaborate with groups like the Coalition to Transform Advanced Care (C-TAC) to work toward systematic changes that will support this type of approach to care for patients and families.

Advanced illness is unfortunately an aspect of life. While our culture no longer whispers the name of serious conditions such as cancer, we far too often go silent on the subject of dealing with a disease that is likely to take the life of someone we love. Armed with this information, I hope you will be willing to speak up when and if the time comes, and insist on access to the resources and the compassion you and your family need to travel across this unfamiliar terrain with dignity.

This column is adapted from a speech Nancy delivered at a summit for the Coalition to Transform Advanced Care; she is co-chair of that organization's Steering Committee.

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