What to Do When You Are Diagnosed with Terminal Cancer
There’s no “right” approach to dealing with terminal cancer — and no one does it in exactly the same way. Still, it can help to consider the reactions and choices you may have after learning that your condition is incurable.
Getting the Diagnosis
On hearing the diagnosis, you may feel numb, as if it were all happening to someone else. Feelings of sadness, fear, loss and anger are also common.
“Some patients never accept a terminal diagnosis and die seeking treatment. Others get the diagnosis, say, ‘OK,’ and start putting their affairs in order," says Greta Greer, Director of Survivor Programs for the American Cancer Society.
People also differ in how they share their diagnosis. Some discuss it readily; others disclose little. Those with small children may want to keep things as normal as possible for as long as they can.
It will probably take more than one conversation to address your concerns and get the information you need. Second medical opinions are also important. Valuable online resources include the American Cancer Society’s “Nearing the End of Life ” and the CDC’s “End-of-Life Issues .”
Medical Care and Clinical Trials
Although your cancer is incurable, you’ll still have treatment options.
William Breitbart, MD, chief of psychiatry at New York’s Memorial Sloan-Kettering Cancer Center, estimates that at least 35% of cancer patients “would benefit from an intervention with a social worker, psychologist or psychiatrist.” Terminally ill patients, in particular, can suffer from depression or anxiety, which are treatable with therapy, medications or both.
You may benefit from life-extending (though not curative) radiation or chemotherapy.
P alliative care -- intended to relieve symptoms such as pain -- can improve quality of life. Be assertive in asking about your options, including alternative therapies like acupuncture. Many experts say pain is undertreated in this country because of concerns about drug addictions.
Some people take part in clinical trials investigating experimental treatments. In a trial, you may receive the very latest of therapies — and you'll know that you're contributing to future advances in cancer care. The American Cancer Society offers extensive information about trials; the National Cancer Institute website lets you search among thousands of studies currently accepting participants.
The Dying Process
Patients’ concerns frequently include getting effective support from their healthcare team, retaining their dignity and not being in pain. Many want some idea of what to expect at the end.
Death from cancer is characterized by a gradual weakening. (Don’t assume you’ll enjoy essentially stable health before a final, swift decline.) The dying person spends more and more time in bed — and less time awake — falling in to a deep, trance-like state before dying.
Giving up hope for a cure doesn’t mean giving up. Among the coping strategies listed in a 2005 study of terminal cancer patients were:
- Taking one day at a time and focusing on the present
- Realizing there will be good days and bad days
- Trying to maintain a sense of normality and routine
- Avoiding anticipating bad things that may (or may not ever) happen
- Doing things you enjoy; don’t just focus on dying
- Remembering that life doesn’t stop if you get a terminal diagnosis
Emotional support is important but may not come from family: “After a terminal diagnosis,” Greer says, “some families draw closer together, but some become more strained and distant.” Many hospitals offer counseling services for couples and families.
Seeking help from friends or relatives can be easier if you start with practical tasks, such as childcare, meals or rides. The American Cancer Society’s Cancer Resource Network also provides support.
Many people with terminal cancer find support from other cancer patients. Hospitals often sponsor cancer support groups. Web-based communities, such as “Dying With Cancer ,” part of CancerChat.org.uk, are also available.
- Do you want hospice care?
there things (feeding tubes, cardiopulmonary resuscitation) you don’t want?
- What about a healthcare proxy, advance directive or do-not-resuscitate order to guide your care when you cannot?
Legal and Financial Matters:
- Are your financial affairs in order?
- Does someone know where to find important papers?
- Are there keepsakes or heirlooms to give to loved ones?
- What about preparing letters or videos for them?
- Do you want to die somewhere other than the hospital? What will that entail?
- Do you want a minister, priest, rabbi or spiritual advisor present at the end?
- Do you want your body buried or cremated? Do you have a burial plot? Would you like your ashes scattered in some special place?
- What are your preferences for a memorial service? Have you shared your wishes?
Above all, you’ll need to decide what to do in the time remaining. Are there issues you’d like to resolve? Do you want to resume your old life for as long as possible? Complete a major project? Travel? If you have small children or grandchildren, time with them may be your top priority.
Some people become advocates. Before his 2008 death from pancreatic cancer, Carnegie Mellon University professor Randy Pausch delivered a “last lecture” that became a best-selling book and popular YouTube video. He dedicated himself to “doing everything possible” to increase awareness of pancreatic cancer.
Whatever you choose, you’ll need a sense of how much time you’ve got. Your doctor may say such predictions are little more than guesswork, but a rough time frame is vital.
Finally, as Dr. Breitbart observes, terminal illness poses existential challenges, such as accepting the life you’ve lived, giving that life coherent meaning and attaining a sense of closure. Consider asking yourself simply, “Am I at peace?”
Breitbart, William S. M.D. E-mail interview. 8 Aug. 2008.
“Cancer Resource Network.” cancer.org. 2008. American Cancer Society. 5 Aug. 2008 <http://www.cancer.org/docroot/ESN/content/ESN_3_1X_CAncer_Resource_Network.asp?sitearea=SHR>.
Clayton, Josephine M. Phyllis N. Butow, Robert M. Arnold, Martin H. N. Tattersall. “Fostering Coping and Nurturing Hope When Discussing the Future With Terminally Ill Cancer Patients and Their Caregivers.” Cancer. 103:9(2005):1965–75 <http://www3.interscience.wiley.com/cgi-bin/fulltext/110432962/PDFSTART>.
“Clinical Trials: What You Need to Know,” cancer.org. 2 Jun. 2008. American Cancer Society. 13 Aug. 2008 <http://www.cancer.org/docroot/ETO/content/ETO_6_3_Clinical_Trials_-_Patient_Participation.asp>.
“Dying With Cancer.” cancerchat.org.uk. Cancer Research UK. 8 Aug. 2008 <http://www.cancerchat.org.uk/clearspacex/community/cancerchat/dyingwithcancer>.
“End-of-Life Issues.” cdc.gov. 16 Jan. 2007. Centers for Disease Control and Prevention. 2 Aug. 2008 <http://www.cdc.gov/Aging/EOL.htm>.
Greer, Greta E. MSW, LCSW. Telephone interview. 6 Aug. 2008.
Martin, Douglas. “Randy Pausch, 47, Dies; His ‘Last Lecture’ Inspired Many to Live With Wonder.” nytimes.com. 26 Jul. 2008. New York Times. 9 Aug. 2008 <http://www.nytimes.com/2008/07/26/us/26pausch.html?_r=1&scp=3&sq=randy%20pausch&st=cse&oref=slogin>.
“Nearing the End of Life.” cancer.org. 2008. American Cancer Society. 5 Aug. 2008 <http://www.cancer.org/docroot/MLT/MLT_5.asp>.
Pausch, Randy, Assoc. Prof. “Fighting Pancreatic Cancer.” cmu.edu. Carnegie Mellon University. 2 Aug. 2008 <http://download.srv.cs.cmu.edu/
Schnur, Julie B. Ph.D. LCP. Telephone interview. 6 Aug. 2008.
“Search for Clinical Trials: Advanced Search.” cancer.gov. National Cancer Institute. 9 Aug. 2008. <http://www.cancer.gov/Search/Clinical_Trials/>.
Steinhauser, Karen E. Corrine I. Voils, Elizabeth C. Clipp, Hayden B. Bosworth, Nicholas A. Christakis, and James A. Tulsky. "‘Are You at Peace?’: One Item to Probe Spiritual Concerns at the End of Life.” Archives of Internal Medicine. 166:1(2006):101-05 <http://archinte.ama-assn.org/cgi/content/full/166/1/101> .
Stone, P. E. Rees, J.R. Hardy. “End of Life Care in Patients With Malignant Disease.” European Journal of Cancer. 37:9(2001):1070–75 <http://linkinghub.elsevier.com/retrieve/pii/S0959-8049(01)00087-9> (subscription).
LifeWire, a part of The New York Times Company, provides original and syndicated online lifestyle content. James Clyde Sellman is a freelance writer and editor in Newton, Mass. who specializes in a broad range of consumer health topics. His work has appeared in the Harvard Health Letter, Harvard Women’s Health Watch, Revolution Health, Infertility Source and My Student Body.com.Source: cancer.about.com