Palliative care offers a vision of medicine that aims to accompany patients suffering from an advanced and progressive disease, whether oncological or not, and their families. This vision focuses on the comprehensive assessment of the patient, taking into account all his or her needs on an individualized basis. On World Palliative Care Day, Suanity specialists highlight the importance of this comprehensive care that accompanies and relieves patients in the most difficult moments.
The aim of palliative care is to provide the maximum possible well-being, minimizing the patient’s suffering. We are always in a vital moment of the person with great impact and multiple needs from different spheres, so extreme sensitivity and delicacy are required. All this accompaniment is based on honest, fluid communication and a real interest in the person and not only in the patient’s illness.
When palliative care is needed
Patients who are candidates for a palliative care team are those suffering from a progressive advanced disease. Thus, it should be possible to offer palliative care to anyone who is undergoing an advanced oncological process, even in early stages and in advanced chronic diseases.
In these situations, multiple doubts can arise in both patients and families, which generate anxiety and stress. It is necessary to have a close team with the necessary knowledge to accompany them all along the way.
When do we talk about advanced disease?
The elements that define advanced and progressive disease have been clarified since the early stages of the development of palliative care. We started with a definition centered on prognosis (less than or equal to 6 months) but nowadays we have a more flexible conception that incorporates criteria centered on the needs of the patients and not so much on prognosis or possible survival time. Palliative care can begin at the time of diagnosis and at the same time as treatment if necessary.
Symptoms of advanced disease
Patients with palliative needs find themselves in very complex situations: they may present with severe uncontrolled pain, particularly striking symptoms such as bleeding, choking or cognitive and behavioral disorders, loss of appetite, weakness, weight loss, etc.
However, what stands out most is the demand factor as one of the most specific to the situation. The causes of this phenomenon are related to the prevalence and intensity of symptoms, but also to the associated emotional impact.
Palliative care teams have to organize their offer with this characteristic in mind, and their success will therefore depend on their ability to resolve difficult situations, their capacity to contain emotions, to offer comprehensive care (respectful, focused on the needs of the patient and family), and an offer of services that are accessible, flexible and able to anticipate problems.
How to access palliative care
The key to timely referral to a palliative care team is the family physician, who knows the patient well and can refer him or her by explaining the benefits he or she will receive.
At the social level, it is important to dissociate the binomial “palliative care-death”, since it is a great erroneous myth. Patients who are followed by a palliative care team live longer (and obviously better) than those who are not cared for by these teams, under the same conditions). The explanation is that the follow-up is very close, complications are foreseen, exacerbations are advanced and can be treated in time….. And most importantly, because palliative care teams advocate for life, for the good life.
Palliative care treatments
The way palliative care works is with an integrative approach, with the person as the center and object of care, not just the disease. We are interested in alleviating and accompanying the suffering that patients and families are going through.
Cicely Saunders, a pioneer in palliative care, made us see what total pain meant, and that in order to attend to suffering it was essential to value not only the physical, but also the emotional, social and spiritual aspects, because everything was an indivisible part of the suffering person.
Elizabeth Kubler-Ross, psychiatrist and writer, knocked on the doors of the conscience of the health care system to warn of the shortcomings in the care of the sick, wrongly called terminally ill, calling for humanization and an approach aimed at the person who suffers emotionally.
A person’s health is not based solely on a healthy organism, but that organism forms an indivisible whole with its emotions, its family and social relationships, its socio-cultural circumstances, its roles, its values and beliefs, its spirituality….
Comprehensive care means that when we take in or attend to a health problem we do not lose sight of the fact that the bearer of that problem is a multidimensional person, and that the more complex or serious the alteration in his or her health, the more we have to broaden our perspective in order to be able to really help that person.
We care for people, not diseases. That is truly comprehensive care. That is humanizing medicine and health care.
Palliative care at home
Palliative care can be provided in an outpatient clinic, in a hospital or at home. Where the patient is cared for will depend on his or her needs at that particular time. We must bear in mind that needs are very changeable in this type of situation. If the patient needs to be cared for at home, he or she will receive the same quality of care as in the other care centers, in an intimate and comfortable environment. If the patient wishes, it is usually entirely feasible to assume the end of life at home.
Sometimes, there may be reluctance to stay at home during the last days, thinking that the patient will be better cared for in the hospital, which is totally false. If the healthcare team decides that it is possible to assume the end of life at home and the patient has expressed a wish to do so, every effort should be made to carry it out. Normally the reluctance is due to the fears of the main caregiver… “I will not be able to”, this statement is based on a fear of ignorance, the truth is that no specific knowledge is needed to be able to care for the end of life, it is enough to have the support of a health team that guides and accompanies us.
Contrary to what one might think, the end is not the most difficult part of the whole process of illness. The capacity of human beings to take care of their patients is surprising. Being able to care for a patient at home does not depend so much on the capabilities of the main caregiver as on his or her will.