Consider Your Options In Late-Stage Cancer

I was thrilled to see the article entitled, “When To Give Up: Treatment or Comfort For Late-Stage Cancer?” in The Post-Journal on June 7, 2016. Although less than half of the people served by Chautauqua Hospice & Palliative Care are diagnosed with cancer, the aggressive treatment issue is the same for most people with a variety of diagnoses. Too often we are told, “If I realized what you do, I would have signed onto services earlier!” Hospice and Palliative care are all about quality of life, not quantity.

The healthcare world we all rely on is changing very rapidly at both the national and local level. It seems a day doesn’t go by in our world of hospice care when new regulations aren’t announced, reimbursements formulas aren’t changed or broad-brush criticisms aren’t levied against us. It is no wonder that consumers struggle to understand what comprises quality end-of-life care.

The lines between different healthcare providers is blurring or changing every day. The job of determining which healthcare provider is best for your needs will be increasingly difficult. As our Federal and state governments work to bring greater efficiencies to health care, new providers are appearing in our area while others are affiliating, merging, collaborating or going out of business. It is incumbent on each of us to understand what care is covered by our insurance, what care is necessary, what additional care is available from other providers, why tests and treatments have been prescribed for us, what qualifications our care providers have, etc. We need to become comfortable asking the tough questions and advocating for ourselves and our loved ones. Just because a treatment can be provided doesn’t mean it is right for us.

If three out of four cancer patients younger than 65 got treatment that was too aggressive, according to the cited study in the article, we are contributing to a grave injustice to those within the health care system. As author and surgeon Atul Gawande points out in his best-selling book, Being Mortal, as long as our society causes physicians to feel like they are failing us by stopping ineffective treatments, we can only have the highest quality time at the end of life by understanding our options and by courageously deciding our healthcare outcomes. NYS has the lowest utilization of Hospice services in the United States. What a sad commentary on what we believe is important when we spend increasingly on high tech treatments but not Hospice and Palliative Care.

Having the conversation about what is important to us is one of the most crucial steps in assuring your end of life experience is positive. Yes, I did say positive. People do say they enjoyed the end of life experience although they were sad to leave loved ones behind. Some indicate they spent more time with their families, they developed a closer relationship with their spouse, they grew as a person, they forgave and were forgiven, they appreciated life more than ever before. Stopping futile treatment is not giving up-it is making the choice for quality. We don’t get to “re-do” this experience. It might be nausea, vomiting, intubation and hospitalization, or it might be comfort, dignity and quality time with loved ones in our own home.

And so it is against this backdrop of change, complexity and competition in the healthcare industry that we encourage you to get to know us before you need us. We welcome the opportunity to speak with you and your family and no medical referral is necessary to meet us and learn about the care we provide. Invite us to your church or your book club to lead a discussion on advanced care planning. The job of understanding local healthcare is becoming more difficult for each of us and it will be necessary for us to play a more active role in investigating and directing our own healthcare.

Shauna Anderson is president and CEO of Chautauqua Hospice & Palliative Care.