Terminally ill patients in the U.S. these days face expensive care and prolonged declines. And many hospitals lack a designated palliative care team, which focuses on patient comfort at any point in the life cycle but becomes more critical at the end. In terms of care, the solution to our medical system's woes might be as simple as a conversation about how we die.

"Many clinicians are afraid to talk about prognosis—how long a patient may have to live," says Alexander Smith, a palliative care physician at the University of California, San Francisco. "Talking about death in America is forbidden, a taboo topic."

Voices clamor to be heard in the discussion about end-of-life care. Patients prefer to die at home and in comfort. Physicians struggle to speak to patients they have been trying to save but worry about legal issues. Politicians debate the best way to curb rising health care costs and shun "death panels." Amid this fervor, researchers in Sweden found last year that conversations about imminent death are associated with improved care and less pain and suffering. Now, a team at Harvard Medical School reveals more detail about the social and psychological factors that affect quality of death.

The researchers interviewed 396 advanced cancer patients and their caregivers, and then followed up a few months after death. Nine psychosocial factors were found to make a significant difference in the quality of patients' final days.

In surveys, patients define (pdf) a good death as one where they can manage their pain, remain lucid, feel prepared and interact with family members. In the new study, patients with a higher quality of life during their final days included those who avoided hospitalizations and stays in the intensive care unit (ICU), were not worried about death, prayed or meditated, received care at home, did not use a feeding tube, were visited by a pastor in the hospital or clinic, did not undergo chemotherapy in the final week of life, and felt an alliance with their oncologist regarding therapy. The results were published online July 9 in the Archives of Internal Medicine.

ICU stays in the final week of life mattered the most, accounting for 4.4 percent of variance in outcomes, whereas a sense of alliance between patient and physician accounted for 0.7 percent. Much of the variance remained unexplained. Other influences could include underlying cancer biology or even a patient's personality and general outlook on life, says Holly Prigerson, a psychiatry associate professor at Harvard Medical School and the study's senior author. But, these factors could give policymakers and hospitals a cost-effective road map for end-of-life care decisions in the future. Prigerson cites the frustration and helplessness that oncologists feel when their patients are beyond curative care. Withdrawal, however, apparently is not the answer. "Just being present and being there, rather than abandoning patients and withdrawing," she says, "matters a tremendous amount to patients."

But not all of the findings have clear policy implications, says Diane Meier, a professor of geriatrics and internal medicine and director of the Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City. How much a patient worries or whether they find comfort in prayer may be hard to change. But already, physicians are trying to keep patients approaching death out of the ICU. Meier says she expects more clinics, hospitals and offices to welcome pastors. Finally, training physicians to convey a sense of commitment and alliance with their patients can help. "These are teachable skills that right now are not in the curriculum at medical schools," she says.

13 Comments

1. 1. ravensview 05:33 PM 7/9/12

   Excellent article. An end-of-life experience is about more than bio-medicine; it's also about the medicine of the heart and mind, those parts so critical to being human, especially as that human existence releases its physical-ness.

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2. 2. Archimedes 11:20 PM 7/9/12

   Most individuals do not face the reality of death until it is relatively imminent. As a result, they are unprepared for the same psychologically and spiritually.
   A hospice professional can provide that psychological, spiritual, and physical support and counseling( relief of pain and discomfort) that makes dying significantly less of an emotional and physical tragedy.
   The hospice role is very similar to the traditional role played by priests with dying patients.
   The good hospice professional, must have,in my opinion, many of the same spiritual, emotional, and psychological traits as Priests requisite for assisting a dying patient adjust to this most dramatic of life events.
   The hospice patient must have the utmost trust in the integrity and character of the hospice professional as the hospice patient is extremely vulnerable during his last days and moments.
   Patients who are at and/or near the natural age of death, from my experience, experience a much more peaceful death and dying experience than hospice patients who are dying at a relatively young age of acute illnesses, injuries, and/or the result of chronic disabling illnesses such as Cancer and COPD. Their bodies and minds have gradually adapted themselves to their decline and death something that those facing acute injuries or illnesses at an relatively young age have not accomplished.
   In my opinion, certain health care professionals, because of their life experiences and character, are much more appropriate and efficacious in hospice than others.
   The planning of Hospice care should be an important part of general preventive health care as the same significantly reduces the pain and emotionally suffering of the hospice patient and his or her family and friends.

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3. 3. jbairddo 08:27 AM 7/10/12

   This won't happen until the cancer industry is honest about which options actually do benefit the patient and not the doc, hospital, clinics and drug companies. One cannot chemo solid tumors, time to be honest with patients until there is a change.
   Leave the government out of end of life issues and if hallucinogenics help, let patients find their own path rather than what some end of life person thinks it ought to be.
   Are the five stages of dying passe now? Never mentioned, probably relevant.

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4. 4. jtdwyer in reply to Archimedes 08:42 AM 7/10/12

   Very well put.
   
   Conversely, while recovering from major surgery early this year I spent two days in an intensive care unit, waiting for some treatment to bring my blood pressure down to safe levels. While I was in relatively good condition, I was of course (thankfully) heavily sedated. Despite that, with all the lights and activity to care for other critical patients, I could not sleep for the entire two day duration.
   
   Because of the sedation and/or sleep deprivation, along with unavoidably inconsistent treatment by staff under great pressure to immediately care for the most critical patients, before long I was consciously aware that I was suffering irrepressible paranoid delusions, centered around the idea that the staff dislike me and intended to murder me... Fortunately I was able to avoid any significant expression of this concern (although I did make some immediate arrangements for my family in the event of my death). I pretty much just suffered in silence, believing in my delusions but also realizing they were the products of hallucinations - much like a bad trip I had in Viet Nam...
   
   Needless to say my stay in ICU was horrific! I was ready to commit suicide to prevent the staff from killing me - despite my being fully aware that these were all delusions! Fortunately, after two days I was sent to a private room where I immediately slept and felt just fine afterwards. My subsequent recovery went really well, BTW...
   
   I mention this experience just to help others understand the potential suffering of patients in very difficult conditions, even when they are not dying. I agree wholehearted that comfortable home or homelike hospice care by capable professionals in the difficult final days can make a enormous contribution to reducing suffering.

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5. 5. mhuque 09:48 PM 7/10/12

   I lost my mother on 30.06.2012 at the age of 91. She was getting her treatment in the Holy Family Hospital, Dhaka,a very good hospital of Bangladesh from 17.06.2012 to 28.06.2012.She was suffering from elderly complication and as this hospital(like all the hospitals in Bangladesh with a few exception ) lack a designated palliative care team, which focuses on patient comfort at any point in the life cycle,we could not provide any sort of comfort to her.
   So I request the relevant authorities of Bangladesh to form a designated palliative care team in every hospital to provide comrrt to elderly patients.

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6. 6. Chris2 05:34 AM 7/11/12

   In democracies the right to life is often enshrined in the constitution. It is important that this is not interpreted as an obligation to live regardless of the quality of life. The right to die with relative dignity is a principle which is legally acknowledged in very few countries, but is worthy of a vigorous campaign.

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7. 7. DrBR33 06:18 AM 7/11/12

   It's the mind and not the body that needs nurturing in the palliative moments, unlike the familiar symptomatic suffering from the malfunctioning vital organs. The waiting mind scans the past- some pleasant and other less so, pictures haunt the dying-no more hallucinating overloads please. Simply sedate me to numb my mind.In sleep we die every night; let sleep hand me over quietly, to her sister-Death- another snooze with an eternity of shelf-life. The Dead have no liability but you make sure I've cleared you in advance. That's my thank you for your service- of course all paid for.

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8. 8. SueWintz 12:43 PM 7/11/12

   This demonstrates the importance of attending to the whole person, not only physically but also emotionally and spiritually. Board certified professional chaplains are clinically trained and serve on many palliative care teams. Professional chaplains don't come into a patient's live with a particular religious agenda because they abide by a national Code of Ethics. Rather, their expertise is in assisting patients and families in identifying beliefs and values, spiritual/religious/cultural resources and practices, and other issues that impact treatment and other decisions. Their skills in communication are an asset to the team. Most hospitals and healthcare administrators don't realize that chaplains are the most cost-effective way to bring whole-person care to their organization.
   
   This topic is one that should be front and center in every healthcare organization and the resources should be directed towards its implementation. Patients should not only expect whole-person care, but demand that the conversations occur and the team resources are made available.

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9. 9. vernwrites 06:39 PM 7/11/12

   My wife contracted ALS (Lou Gehrig's disease), although it took some time to get a correct diagnosis. When we knew what we were facing our family gathered and talked it through. We were married 55+ years, she was 72, my son is an RN with over 20 years experience, and two daughters, one whose daughter (my grand daughter) is a Nurse-Practioner.
   
   ALS, unlike cancer, is never cured or put into remission, although Steven Hawking has had a remarkable run. It take away motor nerve control, but not mental cognition.
   
   We decided on a Do Not Resuscitate order that prevented putting her on a ventilator.
   
   We are Evangelical Christians so the decision is consistent with our beliefs. She died in her sleep.
   
   Another person in town was not a believer and spent the last year of his life on a ventilator with only eye movement.
   
   I belong to an ALS support group that gives all kinds of support, equipment loans, help that is needed, and we bring in experts to answer questions. Our members are PALS, those with ALS; CALS, caretakers; and those of us who lost a loved one to ALS. We're 100% volunteer and the result is a group that has positive upbeat meetings, fund raisers, and do what we can to help.
   
   I bring the Christian worldview, but keep it unobtrusive.
   
   The difference between facing and acting on impending death when it is a direct result of a diagnosis and not as a general notion that can be ignored can be a good way to manage a difficult circumstance.
   
   The Hospice folks in Coeur d'Alene, Idaho, where I live, do an excellent job. They are very good about helping patients stay in their homes.
   
   I was blessed; I kept Barbara at home and took care of her till the end.
   
   I find peace in my faith...but I do miss her...

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10. 10. Greg Angelo 11:24 PM 7/11/12

    Having watched several terminally ill die under conditions of provision of 1st rate care at the physical level, but with medical professionals of necessity, having to ignore the emotional level of the individual's wish to pass on peacefully with with dignity because of legal constraints, there is a desperate need for a revision of the legal structures here in Australia and obviously elsewhere in the world.
    
    Individuals should be able to make decisions concerning the end of their life without interference from God bothering moralists whose God appears to have deserted the terminally ill.
    
    Whilst there is always the potential threat of grasping relatives wishing to hasten the demise of their elderly relatives to get their hands on their assets, it is not difficult to construct a judicial process involving appropriately trained advocates to examine the individuals wish to die, and or the specific circumstances relating to the prognosis of the individual to allow such reasonable decisions to be made to facilitate dying with dignity.
    
    "Do Not Resuscitate" provisions act to a degree in this respect, but require a calamitous failure leading to death for this to operate.
    
    I can assure any advocates of "waiting for nature to take its course", that watching a terminally ill patient either starve to death through inability to eat, to suffer dehydration because of the inability to ingest fluids, or the ultimate indignity of a catheter plus defecating in their own bed that waiting for death under these circumstances is exceedingly distressing for all concerned and places an enormous stress on overworked medical and nursing staff.
    
    In a civilised society if we treated a a dog the way we treat our terminally ill patients we would be prosecuted by the SPCA. Legal structures around dying with dignity must be reviewed.

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11. 11. LindaLSmith7347 11:25 AM 7/12/12

    In addition to the factors cited in the article as contributing to a "good death," research provides strong evidence that many dying individuals could benefit from an openness on the part of their caregivers to acknowledge as normal and common certain unexpected End-of-Life (ELE) phenomena. These include the appearance of deceased loved ones or other unidentified "messengers" who appear to desire to help prepare the dying individual for the transition of death. Such appearances are sometimes witnessed by others and in many cases not explainable by medication or other physiological causes (see, e.g., research by Fenwick, Lovelace, and Brayne, 2009). Skeptical caregivers can cause their dying patients additional distress and deprive them of the comfort of these experiences by denying their reality. Regardless of the reality or cause of these experiences, and regardless of the personal belief system of caregivers, compassionate care demands that dying patients be listened to and reassured that such experiences are common and normal. Bereaved loved ones also frequently report apparent communications from their loved ones after death, and they also deserve reassurance that such experiences are common. In rare cases, mental disorders involving halluciations or delusions may be involved, but far more commonly these are normal events. Before denying and ridiculing these experiences, one must look at the growing body of research studying their frequency and nature.

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12. 12. LindaLSmith7347 01:55 PM 7/12/12

    In addition to the factors cited in the article as contributing to a “good death,” there is increasing evidence that many dying patients could also benefit from having their caregivers acknowledge certain End-of-Life experiences (ELEs). One such experience is the appearance of deceased loved ones or other unidentified “messengers” who apparently desire to help the dying individual deal with the transition of death. Caregivers can add to the distress of those dying and eliminate the comforting nature of such experiences by denying their reality. Research suggests these experiences are common and often not explainable by medication, progress of disease, or other physiological causes – and more often than not, they are independent of the religious beliefs of the dying individual. They are also sometimes witnessed by others. (See, e.g., research by Fenwick, Lovelace, and Brayer 2009, and others.) Regardless of the reality or causes of such experiences, and regardless of the beliefs (or non-belief) of caregivers, compassionate care demands that dying individuals be listened to and their experiences affirmed as normal and common. Bereaved loved ones also frequently report after-death communications from the deceased and they too deserve to be reassured that such events are common and normal. While some rare instances may involve mental disorder, hallucinations, or delusions, more commonly these ELEs are ordinary and in no way evidence of pathological responses to the experience of dying and death. Before denying and ridiculing such reports, one would be wise to read the increasing body of research.

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13. 13. American Muse 01:48 PM 7/14/12

    In America, dying people make money for the health care industry. After they die, the funeral industry gets its share.

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