The number of patients seeking hospice and palliative care has grown significantly since 1974, when the NCI funded the first hospice facility in Branford, Connecticut. Nevertheless, according to the National Center for Health Statistics, 85% of Americans still die in hospitals or nursing homes. This prevalence continues despite research from the National Hospice Foundation showing that nearly 80% of patients would prefer to die in their homes, free of pain and surrounded by their loved ones.
For more than 2 decades, Judith Redwing Keyssar, RN, has helped dying patients maintain their quality of life as they make the transition from life to death. The Director of the Palliative and End-of-Life Care Program at Seniors at Home, a division of Jewish Family and Children’s Services of San Francisco, and author of Last Acts of Kindness: Lessons for the Living from the Bedsides of the Dying (CreateSpace, 2010; www.lastactsofkindness.com), Keyssar talked with The ASCO Post about how oncologists and other medical professionals can use palliative care approaches to help ease the suffering of their terminally ill patients.
The Final Taboo
You say in your book that death is the final taboo in our culture. Why are we as a society unable to come to terms with our own mortality?
In our American culture today, the concept of impermanence is not one we can relate to easily. In other cultures, the fact that birth and death are part of the cycle of life and that we are only here briefly is much more accepted. Also, until the early- to mid-20th century, families took care of their loved ones who were dying at home, and death was more a part of everyday life. Today, people don’t see death in their world.
Slow Acceptance of Hospice
Do recent medical advances, especially in life-threatening diseases like cancer, contribute to making it more difficult for patients—and physicians—to consider hospice care?
I think that’s absolutely true. I read an article that said new treatments for cancer have delayed hospice referrals because there is the hope that a new clinical trial or another treatment might make a difference. And yet often in the expectation and delivery of more treatment, quality of life suffers. How many times have we seen people being given chemotherapy up until a week or two before they die? When I hear a physician say a patient wants to keep receiving treatment, it’s often because that’s what the health-care provider is suggesting to the patient. If treatment is being offered, patients think there must be a good reason and that there must be hope that it’s going to make them better.
But there comes a turning point when continuing treatment is futile and sacrifices the patient’s quality of life. Maybe the treatment will allow a patient to stay alive an extra week or month, but is that extra time going to give him the kind of quality of life he would really appreciate?
Most patients aren’t referred to hospice care until the last month or two of their life and sometimes not until the last few days of their life. That is partly because health-care professionals still have a hard time accepting the fact that their patient is going to die, and they are not comfortable having that conversation with the patient. However, greater acceptance of palliative care approaches and the advent of palliative care physicians and specialty teams in hospitals are starting to make a big difference in helping initiate end-of-life care conversations with terminal patients. We have to acknowledge that having these conversations is as important to the patient’s clinical care as knowing how to do surgery to eliminate the cancer from the patient’s body.
Fear of Death
Why are people so afraid of dying?
It’s like any other unknown we have to deal with. It’s scary because even though we’re all going to experience death and dying, we don’t talk openly about it and we don’t know what the process looks like. While hospice and palliative care practices have become more well known over the past 15 years, many people still don’t know the details of what happens when a person dies so, of course, the concept is very scary. We have to get better at talking openly about death and dying and giving people more information so that it’s not so frightening. Death is a normal process, and we don’t need to be afraid of it.
Making the Transition
How can oncologists help their patients make the transition from active treatment to end-of-life care?
It’s difficult because often there isn’t enough time in a typical office visit to address all the clinical issues and then discuss end-of-life care if treatment fails. It’s important to reassure patients that if conventional treatment fails, the palliative or hospice team will make sure that their life will be free from suffering and as high quality as possible and to dispel the myth that a referral to hospice care means death is imminent. Hospice care is not just about facilitating a peaceful and pain-free death. It’s also about life and assisting patients in having a high quality of life for as long as possible. ■
Disclosure: Ms. Keyssar reported no potential conflicts of interest.