End-of-life care a balance between customization, standard processes

Tools that identify care goals are key part of a successful approach

Quality professionals and the organizations that evaluate them place a great emphasis today on standards — core measures, evidence-based practices, and consistent processes. A dynamic seemingly at odds with this emphasis is the fact that patients are individuals, with unique needs and desires about their care.

Nowhere is this individuality more of an issue than in end-of-life care, as evidenced in a recent study published in the Journal of the American Geriatrics Society1, which examined different ethnic attitudes. For example, the study found, many Arab Americans would prefer not to go to a nursing home as they near the end of their lives, while many African Americans are comfortable with nursing homes and hospitals. Many Hispanic people are strongly concerned about dying with dignity. And many white people don’t want their families to take care of them, but they — like members of other racial and ethnic groups — want their families nearby as they live out their last days.

"One of the most important findings in our study is that there are so many different points of view, it is important for health care providers to treat everyone as an individual," says lead author Sonia A. Duffy, PhD, RN, research investigator with the Center for Practice Management and Outcomes Research at the Veterans Affairs Ann Arbor (MI) Healthcare System, and with the departments of Otolaryngology and Psychiatry at the University of Michigan Medical School, also in Ann Arbor.

Individual patient concerns can affect their attitude on anything from pain management to theology, adds Annette Carron, DO, director of palliative care services at William Beaumont Hospital in Royal Oak, MI. "Certainly there are all kinds of fears about addiction and side effects from pain medication," she notes. "Some families have barriers and are even uncomfortable with morphine."

"As far as standardization, truthfully, we’ve tried to look at standardizing EOL [end of life] care, and it’s not as easy to do because everyone is unique," says Dawn Snyder, RN, MSN, clinical nurse specialist in palliative medicine at Geisinger Medical Center in Danville, PA. "Each individual at the end of life may have different symptoms, and everyone has a unique way of dying."

Still, observers agree, there are some common approaches — and even tools — that can be promulgated in an effort to provide the highest quality of care for EOL patients. These include patient survey tools, pain management, and a common approach to all patients — honesty.

Towards a common tool

"One of the reasons we did focus groups [as part of our study] was for tool development," notes Duffy. "We came up with 40 concepts from the literature, asked about them, and looked at new concepts that emerged from the study."

What were some of the concepts? "What I try to learn in any given moment is what the patients are wanting in terms of heroic measures," she says. "That can be very specific — many may not want a respirator, but they do want antibiotics."

The goal of the tool is to home in on key attitudes — a "culturally transparent" survey, says Duffy. So, for example, a typical question might be: "If you had only six months to live, would you be in favor of having life-extending care or going home and being with your family?"

"We will always ask, In your situation, what goals are important, and how can we help you accomplish them?’" Carron shares. "Some patients want to spend as much time as possible at home with their family and have hospice come in; others want to spend Christmas with them, and we can try and have Christmas early, if need be."

Staff ask patients to write down six short- and long-term goals. "We ask them what’s important," she explains. "For example, who do you want to be with? Yesterday, an elderly woman said she really enjoyed crossword puzzles, but that her vision was now blurred. Something as simple as an ophthalmologist consult and some eye drops solved the problem." Carron adds that the goals are re-visited periodically, as the patient’s condition changes.

Duffy agrees it’s important to revisit patient goals. "In EOL care, things are very dynamic, always changing," she notes. "A lot of times people get better when they are not expected to, or perhaps a cancer has spread to the brain. Then, it’s time to talk again."

It’s a big issue if the patient’s goals of care are not defined, Carron emphasizes. "They may unfortunately go through testing, CPR, intubation processes they never wanted, and that’s significant from a safety issue as well," she says. "We try to make it easier to process, so at least if they have an advance directive we get it on the chart and the physician looks at it. That then translates into an order."

No need for pain

One area of EOL care in which there is clear standardization is pain management, says Snyder. "There is standardization as far as assessing pain on a regular basis, treating and re-evaluating it; these are JCAHO requirements," she notes.

Beyond that, Snyder ventures into an area that is gaining ever-greater credence in palliative care circles. "There’s really no reason for patients to have pain," she asserts. "If people are fearful [of opiates], it indicates a lack of knowledge. "Residents and attendings are fearful, and they don’t need to be. Once you have the knowledge and experience, you see that opiates are safer to use than Tylenol."

"Under-treatment of pain is a real quality issue," Carron asserts. "Most of the time it is a myth that patients will have shortness of breath. Absolutely, patients can be kept pain free; a lot more education is needed in terms of pain management, as well as in equi-analgesic dosing, like converting Tylenol or Vicodin to morphine." (Guidelines, she says, are available from the American Academy of Hospice and Palliative Medicine at www.aahpm.org/sites/.)

"The key is giving the right dose for the first dose," notes Judith A. Dobson, MSN, CHPN, a hospice/palliative care consultant in Danville, PA. "The way you start out on opioids is, you just don’t pick a number based on how sick the patient is or what they tell you their pain number is. If they’ve never had morphine before, start with a very small dose; in IV, that’s two mg, orally, five to 10. Then, you sit with the patient and in 15 to 20 minutes, you see how much their pain is relieved by that dose. Then, perhaps, you add another one. If you picked a number out of the air and gave 90 mg the first shot, yes, it will depress respiration. If you give it the right way, the body becomes very used to it quickly."

One of the biggest challenges, she continues, is the fear that whatever patients are given could cause addiction. Patients have this fear, says Dobson, and "doctors and nurses do not have the right education and still believe if they give OxyContin or morphine the patients will become addicted. It’s just not true; there are genetic, psychological, socio-economic, and environmental reasons people become addicted. Yet, most people fear prescribing for those reasons, and patients fear taking those medications."

One way to overcome these fears is with a key approach recommended by Dobson and others: honesty. "The best thing is to let people prepare," she says. "For example, when a person gets lung cancer, it’s generally not curable. All the treatment that’s given extends life, gives more quality of life, and gives time. Still, the first time you see a doctor and he has bad news for you, whatever it is, it’s important the patient is given the truth in that they are told they have a life-limiting disease."

In other words, she suggests, tell the patient you are pulling out all the stops, but you want them to know the condition will take their life sooner than they may have thought. "People don’t give up hope when they hear honesty," she insists. "They can look long-range and decide, for example, how to prepare their kids. They may, for instance, want to make a video for every coming birthday, or plan for college."

Other changes needed

Other changes can be made to improve the quality of end-of-life care, says Dobson, For example, she offers, "We need to get more palliative care units into hospitals, because that’s where people die the worst deaths." One of the major obstacles, she notes, is financial. "We need legislation that gives us an award like an ICD-9 code for quality end-of-life care," she suggests. "We do not get rewarded for a good death."

Still, there are significant efforts being made. "We started three-and-one-half years ago with an inpatient consulting service," says Carron. "Now, we are in the process of hiring a full-time nurse practitioner and some dedicated chaplains and social workers."

The inpatient consulting service involves a team of palliative care physicians. "You have to ask for a consult from them," Carron notes. "But even now we address physical, spiritual, and emotional needs, advance care planning, and any family or financial and placement issues. We have full pastoral care, so we bring in people with similar backgrounds, or social workers who know the patient’s culture. We also have interpreters available."

Qualified individuals are critical, Snyder notes. "If you are working with a palliative care department, find someone certified in the field — there are board certifications now — to ensure quality of care," she recommends. "They will have more state-of-the-art knowledge."

From a hospital quality standpoint, adds Carron, palliative medicine is best served in the whole service line of care – outpatient, inpatient, nursing, home care settings. "You need good communication of goals of care across the setting," she says. "The whole continuum of care needs to be addressed."

To help ensure patients’ wishes are fulfilled, "Get the advanced directives on the first [computer] screen — right with their insurance number and emergency phone number," Dobson recommends. "You also need more than one surrogate. Have a form that asks, if your surrogate can’t do the job, or is out of the country, please name a number two.’ Also, indicate where the patient wants to die."

Begin preparations early

Finally says Dobson, begin your preparations early in the care process. "Referrals to hospice are coming late because people did not start to have discussions with patients early enough," she says. "You’re supposed to have six months’ [lead time], and we’re getting about 27 days."

How can this problem be addressed? "Docs need to learn how to say the tough things with kindness and compassion and say them up front," Dobson says.

She recalls with appreciation the physician who treated her mother. "He said to her: Mrs. Brennan, you have a life-limiting disease because of this [breast] cancer, but there are many things we can do to help you. You can have chemotherapy, and surgery; we will stay with you, take care of the symptoms you have, and when I realize there is not any more we can offer you and you are getting close to the end of your life, we call that comfort care only. I will tell you when that is.’ Five years later, he says, Do you remember when I told you that?’ Even though she had dementia, she said she remembered, and he said, Now is that time.’ And she said, ’I understand.’"

This type of advance preparation eases transfers to hospice. How can you tell when "that time" has come? "There are clinical guidelines you can use that indicate when someone has about six months to live,"2 says Dobson. "When that time comes, it’s only fair to the patient and their family that they should know."


  1. Duffy SA, Jackson FC, Schim SM, Ronis DL and Fowler KE. Racial/Ethnic Preferences, Sex Preferences, and Perceived Discrimination Related to End-of-Life Care. Journal of the American Geriatrics Society; Vol. 54, No. 1, January 2006: 150-157.
  2. Medical guidelines for determining prognosis in selected non-cancer diseases (Second edition); published by the National Hospice and Palliative Care Organization. Web site: www.nhpco.org/templates/1/homepage.cfm.

For more information, contact:

Judith A. Dobson, MSN, CHPN, Hospice/Palliative Care Consultant, Danville, PA. Phone: (570) 271-0444. E-mail: jdobson@evenlink.com.

Dawn Snyder, RN, MSN, Clinical Nurse Specialist, Palliative Medicine, Geisinger Medical Center, Geisinger Health System, 100 North Academy Avenue, Danville, PA 17822. E-mail: disnyder@geisinger.edu.

Annette Carron, DO, Director of Palliative Care Services, William Beaumont Hospital, 3601 W 13 Mile Road, Royal Oak, MI 48073. Phone: (248) 992-5323.

Sonia A. Duffy, PhD, RN, Research Investigator, Center for Practice Management and Outcomes Research, Veterans Affairs Ann Arbor Healthcare System, Ann Arbor, MI. Phone: (734) 213-2694.