How to assist loved ones as they die

Palliative care How to assist loved ones in dying

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Classical medicine wants to heal. Palliative medicine aims to alleviate suffering where healing is no longer possible. It has been part of the medical curriculum for ten years, but there is still a great deal of uncertainty among the population about its importance and role – just as there is about dying in general.

Petra K. (Name changed by the editors) suffers from multiple sclerosis. She has been bedridden for two years, can no longer speak, swallow solid food, see, or move. The strength is just enough for small sounds of displeasure. So she now makes it clear: she doesn’t want to eat or drink anything anymore. Her parents, who have been caring for her 24 hours a day for years, don’t want to accept that. You can’t let your daughter starve and die of thirst, can you?!

Then a team from the Specialized Ambulatory Palliative Care (SAPV) comes to the house. This includes physicians, nurses and sometimes social workers. The team makes it clear to the family that "letting die" is the right thing to do nothing with "let starve has to do. Dr. Matthias Demandt, internist, oncologist and head palliative physician of the Straubing SAPV team, explains: "The patient is not dying because he is no longer eating. But he no longer eats anything because he is dying." As early as 2004, the German Medical Association stated in its guidelines that basic care for the dying does not always include food and fluid intake "as they can be a heavy burden for the dying".

Too much fluid does harm

In the dying phase, the body is no longer able to process food; even tube feeds are difficult to tolerate. The same applies to fluids: "In the dying phase, one is often no longer thirsty, too much fluid is then rather harmful", says Demandt. The palliative physicians also explain to Petra K’s father that dying and death are part of life. ‘ That he is not doing his daughter any good by continuing to pour water into her even though she is not thirsty. It only makes them cough, accumulates in the lungs and body, and "promotes the death rattle", so Demandt.

Petra’s parents finally stop feeding her and spooning her water. With the result that rumors are doing the rounds in the village that they let their daughter starve to death. Modern Europeans have lost the knowledge of dying that has been passed down from generation to generation since the dawn of mankind. "The problem in our society is that dying has been marginalized" says Demandt "both in the public consciousness and spatially. It was spatially transferred from the family environment to hospitals and mentally tabooed." One goal of palliative care and medicine is to change this state of ignorance. To raise awareness that dying and death are part of life.

Birth and death are natural

Prof. Gian Domenico Borasio fought at the Center for Palliative Medicine at the University Hospital in Munich for all medical students to be required to learn palliative medicine. Ten years ago he had success with it. His book "On Dying from 2013 is a standard work in the field and explains in a way that is easy to understand, even for laypersons, how the dying process works and how patients, relatives and doctors can shape this last journey together with as few complaints as possible.

Borasio’s basic idea is that death, like birth, is a finely controlled natural process that should not be interfered with. If there is no prospect of a cure and dying has begun, one should let nature take its course – and only "alleviate burdensome phenomena as much as possible", according to Demandt.

Progressive weakness, loss of appetite, impaired consciousness and changes in breathing rhythm are all normal side effects of the dying process. Even the so-called death rattle at the end is normal: The body simply no longer manages to completely remove the secretion from the lungs. The sound sounds scary, but it is much more stressful for the relatives than for the dying person himself, says Demandt. At this point, the patient is usually no longer conscious and no longer perceives the rattling or rattling as shortness of breath. It is "very, very important that the family knows this," says Demandt – Otherwise they think their loved one is suffocating." If relatives still can’t cope, they can call the SAPV team. "Then we stand by them."

But the SAPV team is only responsible for particularly complicated deaths. If a person slowly declines in old age or dies of an illness whose symptoms are well managed by the treating physicians, normal outpatient palliative care (AAPV) is sufficient – usually provided by the family physician. "Shortness of breath, pain and nausea can also be treated well by the general practitioner", says Demandt. Borasio also writes that up to 90 percent of deaths could take place at home without problems with trained primary care physicians and possibly hospice aides.

Severely progressively ill

Only if the patient has a severe, progressive disease with a limited life expectancy of usually only a few weeks and complicated complaints occur, is this a case for the experts of the Specialized Ambulatory Palliative Care.

For example, they combat pain, by using a drug pump, or get fluid out of the lungs for shortness of breath. The boundary between AAPV and SAPV is fluid, according to Demandt. When specialized care is prescribed also depends on "what the family doctor is able to do himself." Especially with people like Petra K., For patients dying at home, a certain amount of palliative medical support is very important – for the patient and the relatives.

Four palliative dimensions

Palliative care includes four dimensions of care: The first is physical and involves nursing and medical assistance. In the psychological dimension, fears are reduced, among other things. Also that of the relatives, like that of Petra K.’s father to let his daughter starve to death. The spiritual dimension is "not necessarily religious", says Demandt. Rituals at the end of life lead to more emotional security for patients and relatives. And finally, the social dimension is important. The palliative team tries to establish a stable social network or to strengthen an existing one. Sometimes it also calls in a hospice association for visits, discussions and simple help.

The social dimension also includes keeping caregivers informed and involved at all times. The caregivers and relatives: They are the most important thing for most dying people. The members of the palliative care team explain to them what they can do for the patient beyond simply being present. One option is to help with care. Some people do their own nursing anyway, but "above a certain level of care, we recommend that a nursing service be called in to relieve the burden," says Demandt says Demandt. No one has to have a guilty conscience because they can’t bring themselves to wipe the sick person’s butt.

Being there for the dying person

The most important thing is "to be there for the dying person", says Demandt. And care also includes simple activities, such as preparing medications. The mental health of relatives is also important to palliative care specialists.

It usually helps relatives if they can be active. Feeding and giving water for as long as the patient wants, turning on music, lighting an aroma lamp – all these activities reduce the feeling of having to watch the dying helplessly. The patient’s wishes always come first. Does he want to drink at all, listen to music or breathe peppermint scent??

If a dying person can no longer speak, it is practical to have such things written down in advance in what is known as a "sensory order" that some hospice associations hand out. Patients write down here, for example, which fragrances they like, which songs or which skin cream. For Petra K. there is a fragrance lamp with lavender oil on the window sill. When she gets restless, her mother turns on the CD player. Enya sings and Petra relaxes.

If the dying person likes pineapple, it is possible, for example, to gently wet the mucous membrane of his mouth with a piece of pineapple. Breathing dries out the mouth and causes a kind of "thirsty feeling", that is not based on lack of fluids, says Demandt. Mouth care is a very important task for the relatives, as the nursing service, social care unit and palliative team cannot be there all day long to keep the oral cavity moist. A member of the palliative care team who specializes in oral care explains how to keep the mucous membrane moist with fruit, mouth spray or moist swabs.

Breathing against fear

A respiratory therapist from Demandt’s team also shows family members and patients how to relieve anxiety through shared breathing exercises. Everyone should get through this difficult time in good mental health. Still, some families threaten to collapse under the burden. "Getting and accepting help for the dying person and for yourself is not easy", says Demandt. "To realize ‘I can’t do this anymore and I need help’ is an amazing achievement!" An achievement for which Petra K.’s parents took months. They felt it was a weakness not to be able to cope on their own and didn’t want strangers in the house. Then they realized that the palliative care team and the nurses were no longer strangers," says Demandt.

Some people don’t want any help until the end, even if they urgently need it. The palliative care team accepts this, too, because "The patient’s will is our highest guideline, no matter how absurd it may seem to us." A point that is very important. Again and again, people believe that palliative physicians accelerate dying, even against the will of the patient and relatives. But that is not true.

Alleviating suffering

According to Demandt, active euthanasia wants to "abolish the dying process". It thus shortens life. Palliative medicine, on the other hand, does not shorten life, but alleviates suffering as best it can. Always in accordance with the will of the dying person and his family. To ensure that this works smoothly, it is helpful to have a living will in which the patient has recorded his or her wishes about medical care. This also makes it easier for the relatives. The order frees them from important decisions.

In the long run, relatives benefit from taking on the difficult task of caring for the dying, Demandt says: "Accompanying a relative eases the grief." You could turn grief into something constructive for the future, he says. Seeing the entire dying process and thus also understanding it to some extent makes it easier to accept death. This is also how Petra’s K.’s brother. He cared for and accompanied his sister in the last weeks of her life. "A large part of the mourning work", he states after the funeral, "I’ve already been through it."

How to get palliative care?

General palliative care is provided either through the family doctor or another attending physician with basic training in palliative medicine. Since 2007, terminally ill patients with complicated symptoms and a short life expectancy have also been legally entitled to Specialized Outpatient Palliative Care (SAPV). It does what the palliative care unit does in the hospital.

Any doctor can prescribe SAPV. It is free of charge for the patient and does not burden the budget of the general practitioner. Anyone who wants an SAPV team for themselves or a relative should approach the attending physician.

Last resort

Most people want to die at home. In order to make this possible and to provide the relatives with basic knowledge in the areas of dying, death and mourning, so-called "last aid" has been available for several years-Courses. The courses provide basic knowledge and basic skills in dealing with the dying.

Each course consists of four complementary modules:
Accompanying/Caring for the Dying
Precaution and decision
Alleviating symptoms
Saying goodbye