After the medical options have been exhausted, second-opinions return with identical diagnoses, and the emotional strain on family and friends has begun to take its toll, many people with terminal conditions begin to consider what has become known as a “good death” – one’s wish that their death be dignified, painless, and of their own choosing. Sociologists studying this phenomenon in various cultures recognize that seeking a “good death” is a distinctly common human desire; in a life that may have been so completely out of their control, a person often wishes to take charge of this one last thing.

A “good death” extends beyond the terminal patient, applicable also to the family and healthcare professionals present in their final days. Experts argue that access to good palliative care should be available to all patients who are dying: not only to ease the physical suffering of the patient, but also to ease the grief of the family still fervently clinging to hope for recovery. While death can at times seem unfair and premature, especially in cases of a loved one, it is the responsibility of healthcare professionals to ensure that their patients’ wishes for a “good death” are carried out.

Working on the “other side” of healthcare, where the objective to cure is replaced by the goal to comfort, many of these therapists and palliative care professionals walk a tenuous line: compromising the wishes of a dying or comatose patient with the emotional turmoil of a family at vigil. A hallmark goal of this aspect of healthcare is that no one should be alone at the end – and this applies to both sides of the therapeutic divide.

The Terminal Patient

There is a thin corridor in medical science that many of today’s patients find themselves walking: neither “disease-free” nor “succumbing” to their disease, they occupy a sort of stasis, carefully managed by a daily cocktail of medications. Patients with inoperable end-stage cancers or neurological conditions, such as Alzheimer’s disease, may have halted the progress of their disease, but their current symptoms persist – and at what cost?

The patient response to a terminal illness runs a gamut of possible reactions when one faces their own mortality. Some patients choose to stop all debilitating treatments and medications in favor of a more lucid, fulfilling time with family and friends. However, other patients become more determined to fight their illness, continuing aggressive treatment in the hope of success; still others reject conventional medical treatment altogether in order to pursue radical treatments.

Regardless of the patient’s particular disease management approach, it is important that palliative care be offered if it seems likely to help manage pain and improve their quality of life. To this end, professionals from palliative and respiratory care departments at the Eau Claire, Wis.-based Sacred Heart Hospital work in unison to treat the whole patient and their family – aiming to meet physical, emotional, financial, and spiritual needs. Hosting the only palliative care program in western Wisconsin, Sacred Heart Hospital also offers spiritual counseling and social services, as well as comprehensive pulmonary services to its terminal inpatients and outpatients.

“The most common patients that we deal with that have terminal illnesses are lung cancer patients,” says Matthew Raine, RRT, a respiratory therapist at Sacred Heart Hospital. “A lot of the ‘long-term’ patients we work with include [chronic obstructive pulmonary disease] patients, dealing with emphysema and chronic bronchitis.”

In contrast to other forms of cancer, lung cancer often remains undiagnosed until it is already in the later stages of development, at which point, surgery is no longer an effective option. While several medical approaches are presented to the patients, most are not intended to cure them, but rather relieve them of the discomforts associated with the disease. Even with more aggressive treatments, the current five-year survival rate for lung cancer is only 14 percent, a heavy-handed statistic that has many patients rethinking how they would prefer to spend their remaining time.

Another focus area for palliative care services is the skyrocketing number of seniors entering hospice care facilities. At a crux where modern medical technology has the resources to extend a patient’s life, yet lacks the ability to ensure the quality of that life, appropriate palliative services has become the hot topic in senior healthcare. Working with geriatric patients suffering from end-stage dementia, heart disease, pulmonary fibrosis, and cancer, Cheryl Woodson, PhD, a geriatric care expert, believes the gaps in today’s healthcare system will cause problems in the future.

“The first of the baby boomers reached age 60 in January 2006, ushering in the largest group of seniors in American history,” says Woodson, founder of the Chicago Heights, Ill.-based Woodson Center for Adult HealthCare. “Because the baby boom cohort is so much larger than previous generations of seniors, instead of an age wave, some have dubbed their impact on society the ‘Silver Tsunami.’ I believe America is poised to drown. Medicare and other current eldercare policies cannot manage the seniors we have now; the system is in no shape to manage the baby boomers’ needs as they age.”

A “Comfort” Treatment

It’s not giving up, and it’s not giving in. A patient’s decision to change the focus of their treatment from “cure” to “comfort” is about weighing quality of living versus quantity of life. It is about clarifying choices and the goals of the individual and family. As the patient juggles the aspects of palliative care – holistic care, pain management, home versus hospice care, spiritual issues, and familial support – experts say it's crucial that healthcare professionals remain supportive of these decisions.

According to Jeanne Weggel, APNP, the palliative care coordinator at Sacred Heart Hospital, “For those who are considered at end-stage, who have made the decision for ‘comfort only’ or for those who are not improving after a trial of all normal treatments, narcotics and anxiolytics are used – with the goal of comfort and allowing the natural process of dying to occur either in the hospital or at home, or at a nursing home with hospice care.”



In particular, neurological conditions can create a difficult transition for families as the patient gradually loses function and is forced to succumb to technological support. As many of these diseases progress, the muscles of the throat gradually cease to work, causing swallowing difficulties, gagging, choking, loss of voice, or difficulty breathing. Patients with trouble swallowing usually eat less, do not receive proper nutrition, and also run the risk of choking while swallowing, causing food to be aspirated into the lungs.

A speech pathologist is usually called upon to teach the patient new swallowing techniques to reduce the likelihood of aspirating their food. However, teaching requires coherency, and some patients, such as those suffering from dementia, are usually sedated to keep them relaxed. Caregivers may turn to naso-gastric feeding tubes, and, under the guidance of a nutritionist, will prepare “thick-liquid” diets comprised of thin cream of wheat, mashed potatoes, or thickened broths that are easier for patients to swallow.

“I never tell a family there is no hope – I say, ‘Medical science does not have anything else to offer at this point,’” says Woodson. “Rather than continuing to do things to the person that will not [accomplish anything], it is now appropriate to change the goal from ‘cure’ to ‘care.’ Since we can’t win this game, we’ll change the rules.”

If the family chooses not to insert a feeding tube, they may have decided that they are now willing to allow death to occur. Comfort measures can be given, and many patients are still able to enjoy food during this period. However, if the person is totally unable to eat without a feeding tube, the body will slowly shut down over a period of one to two weeks.

“The primary challenge [in palliative care] is managing terminal dyspnea to promote comfort,” says Woodson. “We administer oxygen, regardless of the O2 level; the patients do not have to be hypoxic. If that is not enough to achieve, we use small doses of morphine. In very small doses, the drug may not suppress respirations, but it kind of disconnects the brain from the lungs so people aren’t aware they are short of breath.”

Family Matters

In circumstances where the patient is made noncommunicative by their illness, severe conflicts can erupt between family members about the type of care administered to the patient. Some members may desire the patient to die at home surrounded by the familiar, while others may favor placing the patient in a facility to lessen the trauma to the family. Also, while some of the family may wish to “get it over with” and end the patient’s suffering, others, who have trouble accepting that their loved one is dying, may wish to continue aggressive medical treatments.

“The most difficult situation for me personally is a family that wants to do everything at all costs, regardless of outcome,” says Woodson. “These families do not understand that the checks are cashed in their loved one’s suffering. That violates my personal ethics, and I have asked more than one family to fire me and transfer care to a physician who was more comfortable with the situation. I have said, ‘I can’t help you hurt her; we’ll need to find you another doctor.’ You don’t abandon – you put them in somebody else’s hands.”

On occasion, palliative care professionals may witness families arguing about aggressive treatments in front of the patient, usually when they can no longer communicate. At this point, professionals will often remind family members that the patient can still hear everything that they are saying while in the room – a reminder that is often enough for many families to act more considerately. Also, these patients may be able to blink an eye in a “yes-and-no” response to questions, which could settle aspects of the debate.

“There is always an emotional tug when we as healthcare professionals cannot fix a problem, but there is also a point when providing aggressive care doesn’t feel right either,” says Weggel. “Many times, the patient or families are asking for a gentler, softer type of care, and being able to provide aggressive comfort care is the perfect option. There is nothing more wonderful than watching a patient who has been struggling with dyspnea, but fighting the interventions we are using, start to relax and rest with comfort medications.”

Palliative care professionals will try to encourage as peaceful an atmosphere as possible around the patient. Part of this means keeping the family informed about the medical procedures being done. Often, when a family is at vigil, sleeping on cots or in chairs in the patient’s room, they can become agitated by the disturbances and minor intrusions of healthcare professionals.

“Once they start getting into the critical care units, where the patient might take a turn for the worst, or their health starts to deteriorate, that’s where the therapist has to let the family know ‘this is what is going to be expected of the patient; this is what is going to happen; this is what you’re going to see,’” says Raine. “I precept students here also, and I tell them, ‘by letting the family members know what you’re doing and why you’re doing it, they’re not going to be hovering over you, and allow you the autonomy to work with the patient around the bed.’”

The Hard Part

While there are several difficult moments in providing end-of-life therapy to a terminal patient, among the most graphic and momentous is withdrawing ventilation from a conscious patient. Unlike comatose patients, these people interact with the respiratory therapist – regardless of what level that interaction occurs – whether mouthing, writing words or making requests. Over time, a bond of trust develops between the therapist and the patient, and the professional begins to expect to see the patient when they come to work.

“When the patient is terminally ill, and we are going to remove the ventilator or life support of any kind, we will time it with nurses,” says Sara Dombrowski, RRT, a colleague of Raine. “At Sacred Heart, we actually call pastoral care services – whether a nun, priest or chaplin – and we try to time that, as well. We let the family choose the time that works for them, when they can have all their family around. We pick a time and we all meet, and we’ll page pastoral care, and they come and pray with us, the patient, and the family. If it were me, [I would] feel more comfortable having that at bedside.”

Conscious patients who have terminal weaning performed have usually participated in the decision, whether through advanced directives or interactive discussions with family members and medical staff. In many cases, the weaning will begin with the patient alert throughout the process until death occurs. Understandably, this can be a challenging experience for the respiratory therapist who has gone from interacting with a patient to removing assistive ventilation in a very short period of time.

“We are human – We do feel badly when patients we know die, but I find it helps to re-frame the experience,” says Weggel. “If the patient has come to his or her natural dying time, I concentrate on how I have made that time easier, more comfortable for the patient. I remember how I supported the family through that tender time – educating them on the process, answering their questions, and stressing the importance of their presence as they vigil their loved one.”

She continues, “It does become easier over time. Research has looked at healthcare practitioners who provide end-of-life care and found that it takes about two years to build up a comfort level with conversations and practices involved in end-of-life care. Those who reach that level often find that providing care to patients who are terminally ill is the most rewarding part of the job.”


— Bob Stott is a staff writer for Therapy Times. Questions and comments can be directed to bstott@therapytimes.com.