Oncology Physicians Urge More Candor In Care

Of Dying Cancer Patients

DANBURY — Patients do not want to hear that they are dying and doctors do not want to tell them. But new guidance for the nation’s cancer specialists says they should be upfront and do it far sooner.

The executive director of Regional Hospice of Western Connecticut, Cynthia Roy Squitieri, could not agree more.

“Discussing plans for end-of-life-care may seem difficult, but knowing how your loved one wants to be cared for can make a significant difference,” Ms Squitieri told The Newtown Bee this week. “Patients and families who have conversations early in the course of an illness are more likely to benefit from the full continuity of care that palliative care and hospice have to offer.”

The American Society of Clinical Oncology (ASCO)says too often, patients are not told about options like comfort care or even that their chemo has become futile until the bitter end.

To help families broach the topic, too, the group developed an easy-to-read booklet about those choices, from standard care to symptom relief, and advice about what to ask to maximize remaining time.

“This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning,” says ASCO chief executive Dr Allen Lichter. “When everyone is well and has their wits about them, it’s time to start the process.”

The guidance and booklet — available by linking to the pdf file at cancer.net — mark an unusually strong push for planning end-of-life care in a profession that earns more from attacking tumors than from lengthy, emotional discussions about when it is time to stop.

“This is a clarion call for oncologists to take the lead in curtailing the use of ineffective therapy and ensuring a focus on palliative care and relief of symptoms throughout the course of illness,” the guidance stresses.

But it is part of a slowly growing movement to deal with a subject so taboo that Congress’s attempt to give such planning a nudge in 2009 degenerated into charges of “death panels.”

Now consider a program in Pittsburgh named Closure. In so-called “community conversations,” the program teaches families how to talk with each other and their doctors about what they want — and want to avoid — in their final days.

Created by the Jewish Healthcare Foundation, sessions have spread to hospitals, religious centers, and neighborhoods around the city, and a website opened last month at closure.org.

The sessions are frank. Doctors tell of entering hospital rooms late at night asking for resuscitation preferences should a very ill patient worsen only to find relatives did not know their loved one was that sick.

“There is going to be, over the next few years, a groundswell of people telling physicians, ‘I don’t want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest,’” predicts Dr Jonathan Weinkle, a primary care physician who advises the program.

“Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”

Closure participant Pearl Moore, a retired Pittsburgh oncology nurse, urges people to start planning before they are ever sick, when it is easier to discuss.

Ms Moore’s mother died of stomach cancer without health workers or family ever discussing the inevitable. Haunted, she returned to college to specialize in cancer nursing. She helped her patients discuss quality of life, “to be able to live until they died, is the way I put it,” Ms. Moore says.

And years ago she prepared her own living will and other health care directives, giving copies to her daughter, Cheryl, as soon as she was grown.

“Remembering my mother, we had the discussion,” says Ms Moore.

It is not clear how often those who are still healthy like Ms Moore do that kind of advance planning.

But the oncology society says it is not happening enough with the very sick. Fewer than 40 percent of advanced cancer patients have what it calls a “realistic conversation” with their doctors about what to expect and their choices of care.

The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life. They are spending more of their last months hospitalized. They are not told that a lot of expensive, side effect-prone therapies buy at best a few more months.

They think palliative care — specialized care for pain, nausea, shortness of breath — means giving up when it should be offered with standard anti-tumor care.

And they are not referred to hospice until their final days. Dr Lichter tells of a lung cancer patient who spent his last days on a ventilator, unable to say goodbye and incurring $25,000 in hospital bills, because his family called 911 when he became short of breath.

Hospice care could have eased that symptom at home. Locally, Ms Squitieri said her office is ready to step in and offer support.

And despite the negative connotations of such conversations, many family members of former hospice patients tell the professionals at the Regional Hospice of Western Connecticut that they wished they had made the call sooner, or were encouraged to.

“We are always available to meet with patients and families to determine if our programs and services would be appropriate for their needs,” Ms Squitieri said.

The oncology physicians society plans to issue detailed guidelines to help doctors conduct those tough conversations by summer. Meanwhile, among its advice for patients:

*Ask your doctor about pros and cons of different treatment options, and discuss your priorities, including quality of life, with the doctor and family. You can change your mind later.

*Ask about palliative care for symptom relief along with your chemo. A major study last summer found that combination helped advanced lung cancer patients live a few months longer, because people who feel better can tolerate more anti-cancer treatment.

*A living will ensures health workers and family know your choices when you cannot communicate, including whether you would want such things as a feeding tube.

*Most clinical trials for experimental treatments will not admit people who have already undergone multiple treatments, so consider that option early.

Associated Press content is used in this report.

 

SIDEBAR / PULLOUT

Starting the Conversation About Hospice

Regional Hospice of Western Connecticut Executive Director Cynthia Roy Squitieri notes, “People stop us in elevators, restaurants, or the grocery store and ask, ‘What do I say to help my neighbor or loved one get hospice care? When is it the right time?’” The agency’s experts, Director of Clinical Operations Mary Kincart, RN, MS, and Social Work Supervisor Debbie Ryan, MS, LCSW, share their insights on what you need to know.

When should a family begin considering hospice care?

Ms Ryan: If you are even wondering if hospice is okay for you, you should be asking about it now.

Ms Kincart: If your doctor says it will be three, six or even 12 months before you stop curative treatment, it is still okay to find out about Regional Hospice.

Ms Ryan: A lot of people think they will know when to call Regional Hospice because their doctor will tell them. But, sometimes physicians find it hard to discuss and may not be direct about it. You can feel comfortable asking your physician if it is the right time — they may even be glad you brought it up early.

Ms Kincart: There is a certain point in an illness when hospice care becomes the right thing to do.

Ms Ryan: We can’t say to everyone what the specific time should be to contact us, but they should know about the programs and services we have available. If you call us before you think you need us, and discuss it with your physician, you can choose your own route.

What can I say to my doctor?

Ms Kincart: If you don’t think the illness is responding to treatment, you can tell your doctor, “The treatment does not seem to be slowing down the disease progression. What should we do now?”

Ms Ryan: Or you can ask, “What if this doesn’t work?” It will provide the opportunity for discussion. Be confident in having the conversation.

Ms Kincart: Patients deserve hospice — it really is a treatment choice. People don’t always understand how much we can help. Hospice is a specialty like cardiology or pediatrics. Think of it as asking your doctor if you should see a specialist for this aspect of the illness.

Why call now? What can Regional Hospice do for me?

Ms Kincart: If you are feeling overwhelmed, we can help. We can provide equipment, medications, personal care, nursing, and emotional support that might not otherwise be available to you.

Ms Ryan: Most services are provided at no cost to the patient or their family. Even medications related to the illness are paid for. This can make a big difference when finances are tight.

Ms Kincart: We come to your home — your family residence, a skilled nursing facility or assisted living — even the hospital. Wherever you are, we will bring our team of experts. Just give us a call.

To find out more about Regional Hospice programs and services, or for a free consultation, call 203-702-7400.