Talking About Death

Discussions about end-of-life can benefit patients and their families in dramatic ways. Unfortunately, the emotional discomforts for both physicians and patients often serve as insurmountable obstacles to initiating these important discussions. 

A study at the Dana-Farber Cancer Institute and reported in JAMA may help.

Looking only at patients with advanced cancer, researchers explored the associations between end-of-life discussions and patient mental health, medical care near death and caregiver bereavement adjustment. You can meet the lead author, Dr. Alexi Wright on this 2-minute video.

Here are some findings from the study, paraphrased for ease of blogging:

• Less aggressive care at the end of life was associated with better quality of life for patients.
• The earlier patients began hospice, the better their quality of life at the end of life.*
• The better the patients' quality of life near death, the better the survivors fared after the death.

In light of these findings, less aggressive care and early referral to hospice can be considered proactive steps in the pursuit of high quality care at the end-of-life (and not as "giving up.") When combined with hopeful acceptance (as explained in this letter to NYTimes), physicians and their patients may feel more comfortable initiating and pursuing timely end-of-life discussions with patients. 

Planning for end-of-life care is emotionally trying. What's more trying is dealing with end-of-life when you haven't planned for end-of-life care.

[*as long as patients entered hospice at least a week before death.] 

Comments

[Jeanne M Hannah]

Wendy, families will find wonderful guidance about how to initiate discussions about end-of-life planning with their loved ones at this website: http://www.caringinfo.org/PlanningAhead.htm

Also, The Five Wishes is a loving, caring patient advocate designation document, called by the Miami Herald "the living will with a heart." Your readers can learn more about it here. http://www.agingwithdignity.org/five-wishes.php

[Wendy S. Harpham, MD]

Great resources, Jeanne. Thanks for sharing. With hope, Wendy

[Judy Goldthorp, RN, CHPN]

Amen to your recent post.

As a hospice nurse since 1987, I have taken care of many patients and families, as they faced end of life issues.

In 2007, my mother was on hospice for 10 days. Her symptoms were controlled. I had support from the hospice staff who allowed me to be more her daughter and less her nurse (although I still carried out some nursing functions, like giving medication). I knew that the hospice staff was only a phone call away.

My sister (and only sibling) died 24 days later. Ovarian Ca diagnosed 3.5 yrs earlier, followed by one chemo protocol after another. The next to the last round of chemo, according to my brother in law, was described by oncologist as something "that probably won't help, but won't hurt either." (I wonder if Medicare would provide coverage for that medication if the progress notes had the same language.) Two days before she died, she had an appointment with her oncologist. The chemo obviously wasn't working, and instead of having the talk about hospice with my sister, the oncologist came up with some other (oral) agent.

I tried to talk to my sister and brother in law about hospice several times; they insisted that my experience in TX would not translate to the hospices in MD. Even when I called the local hospice to confirm that they would cover cost of paracentesis / thoracentesis, my sister and brother in law continued to resist hospice. She was seeing a palliative care doctor for pain management. This doctor was one of the medical directors at the local hospice. This doctor had tried to discuss hospice with them, but had to drop the subject, because she was concerned that they (my sister and brother in law) would reject her care . . . their perception (this goes along with your meeting with the oncology fellows) was that this doctor was "pushing (them) away from hospice," when the opposite was true.

They finally agreed to hospice one Sunday night around 7 pm; of course there was no nurse available to admit her. I ended up talking to the oncologist on call (of course, her oncologist was not on call . . . I would have liked to ask her some questions) and he called in some medications to ease her breathing. She had one dose before she died. At the Shiva, my nephew said "there were things I wanted to say to my mother." I wanted to scream: "That is why you should have had hospice!" It is 3 years later and I am still angry about being deprived of being the sister that night; I had to be the nurse.

All this happened 3 years ago, and some of the issues are just as fresh and unresolved (to me) as they were then.

Keep talking to the Fellows, the Residents, and your fellow Survivors. Hospice does not have to be a dirty word. I have had a number of patients who were very ill when they first came on service. In retrospect, we saw that many of their symptoms were side effects from chemo, so when they resolved, patients had some quality of life -- good time with their family and friends. My sister and her family could have had this additional support from a hospice team, but would not accept it until it was too late.

[Wendy S. Harpham, MD]

Dear Judy,

You are most generous to share this deeply personal reflection on the end-of-life care of your mother and sister, especially since your feelings are still raw.

One question that was posed at the seminar on Thursday was "What should an oncologist do if the patient and family insist on more treatment so the patient won't lose hope?" My answer was that oncologists have an obligation NOT to prescribe futile treatments, especially if doing so would likely impair quality of life. I'll expand on my answer in my next blog post.

I was also asked "How and when should an oncologist broach the topic of hospice when the patient signals that such as discussion will precipitate great fear and a sense of the physician giving up?" I'll also address this more fully in a coming post, but the quick answer is that we need to change the culture so that end-of-life discussions are a routine part of routine care. I know it can happen. Just look at how we now talk freely about our survivorship (instead of talking only in whispers, feeling ashamed of having "the big C"). And we now require advance directives be noted on all hospital charts (instead of avoiding the topic when a patient is admitted to the hospital).

End-of-life discussions are emotionally charged because we are wired to want to survive. But when clinicians' compassionate words and tone of voice couch the healing truths about hospice, we can avoid the pain and loss of false hope. We can gain the many benefits of good hospice care.

Judy, your sharing your pain in this public forum can help people talk about the price of offering the false hope of futile treatments.

With my condolences and with hope, Wendy