Rights Of The Terminally Ill Person, The
A group of health professionals, members of the Catalonian-Balearic Society for Palliative Care, have drafted The Rights of the Terminally Ill Person.
It is true that there is now great sensitivity as regards the rights of the human person, but, in spite of the high degree of sensitivity to and recognition of these rights, it is also true that this fact does not guarantee that these rights will be respected in daily practice.
The Rights of the Terminally Ill Person are fundamental rights of the human being. Therefore, if they are already an exigency throughout a person's life, they cannot cease to be such when the person reaches a terminal phase, but, rather, they should, insofar as possible, be consolidated in that situation.
We reiterate that persons at that point in life have certain rights because of the very fact that they are persons, by their very nature, and that they must maintain the dignity corresponding to them as such, even in their physical decline. These rights are not, therefore, a generous concession of civil society, which, on the contrary, must protect and guarantee them because they are intrinsic to every human person.
Social structures condition the realization of human rights. An unjust social structure not only would be unfavorable to the development of human rights, but would obstruct and turn them into an instrument to oppress the weakest and neediest.
Some are convinced that it is risky to speak of rights: a risk consisting of presenting expectations which are excellent in theory, but unrealizable in practice and thus lead inevitably to disappointment and frustration.
Of course, this risk exists. The very notion of "right" implies a rather partial and personalistic perception: in claiming one's own rights as a person something quite legitimate, moreover man may enclose himself within himself and forget the rights of others who as needs to be said also require attention and respect. Unfortunately, we all know people who are always speaking about their rights and therefore act aggressively, selfishly, and inharmoniously in relation to others.
Many health professionals do not look favorably upon formulating the legitimate requirements of the sick from the standpoint of rights they prefer to speak of needs. The reason they give is that, whereas in the world of work the union of forces originating from a single consciousness of individual rights may suffice to claim those rights, the sick person instead finds himself in a position of weakness and absolute dependence on institutions and health professionals.
This kind of aversion to speaking of rights may also appear because, when we speak of them, we usually speak abstractly, in an ideal context separated from the experience of real people, or because we consider them from a strictly legal standpoint, far from the human warmth people seek in their relationships.
While recognizing overtones which are probably Utopian in this paper, we cannot deny the serious effort involved in translating into the language of rights the needs of the person in a terminal state. This was the aim of a group of health professionals in the Catalonian-Balearic Society for Palliative Care; they have sought to do so on the basis of their reflection and daily practice and now offer us the result of their work, as clear and precise as possible.
We have not invented any right, but merely observed their existence. Now, in order for these rights not to be perceived as merely a moral value, it is necessary for the positive laws of the State to safeguard and protect them with decision and effectiveness. If not, they could easily be violated with the false excuse that they are solely a matter of aspirations, Utopias, and good intentions.
Furthermore, it must be borne in mind that a solemn declaration of the rights of the terminally ill, though deserving our respect, does not encompass all the needs of patients and their families.
The human person stands above all categorization and transcends all definitions and declarations, even if utterly incontrovertible. Each person aspires to getting certain problems his or her own solved. How can we provide an adequate response to these problems? By simply paying close attention to the specific situation unrepeatably experienced by each patient. And this demands real humanity in medicine. Technology and scientific advances can never signify in practice an exclusivistic option closing the way to the humanism which has always been the glory and honor of medicine. This is the responsibility not only of health professionals, but also of each and every citizen. Every right is implicitly accompanied by a duty.
We once more insist that it is necessary to descend from the world of ideas and knowledge to situate ourselves in tangible, effective achievements involving the terminally ill. Kierkegaard reminds us of this fact when he affirms that the fundamental values rights, for example can be known and appreciated as abstract, universal concepts, but they must be lived out in personal, concrete reality.
Let us make a declaration of rights, but let us not fall into the naivete of believing that the mere formulation of them will automatically generate their acceptance and, even less, their application. We cannot, therefore, remain at ease repeating theories if they are not echoed in the social milieu.
I shall adopt the words which the Director General of UNESCO pronounced forty years ago: "As long as a single right of a single man can be violated with impunity, the Declaration of the United Nations will accuse us of cowardliness and sloth and will remind us:
that we lack a shared sense of humanity;
that each of the rights of the terminally ill, each line, condemns resignation, and each word forces us to examine our current healthcare situation."
I am certain that these rights will be applied as hoped, though perhaps with a century-long delay. But, undoubtedly, when that day arrives, new horizons and perspectives will be opened in the contemporary generations because they will feel dissatisfied with this long delay.
And the result of such dissatisfaction will surely be a new push forward.
We accept that all of this is a Utopia, and it certainly is, just as a century ago the right to health care or the heart transplant was. The pseudo-realists must be reminded that Utopia forms part of reality, that it is a premature truth, and that all necessary efforts must be made so that it will become a complete actuality. Fortunately, we can count on the verifiable and quite positive experience of many health professionals and facilities reinforcing the humanitarian attention we desire for terminally ill patients. This attention is required of us, for both they and we are human beings.
Catalonian-Balearic Society for Palliative Care
The Rights Of Dying Patients
1. To Be Treated As A Human Person Until The End Of Life
Man, simply because he exists, possesses dignity as the only being with inherent value and not just as a means. Equal and reciprocal respect for human dignity, the basis for community life, is not something conferred on the person from outside or granted to him by society. It is a special, singular value belonging to him because he is endowed with intelligence and freedom and, consequently, deserves everyone's respect. This principle is familiar to the Universal Declaration of Human Rights, which in Article One establishes:
All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and must act in a fraternal spirit towards one another.
This human dignity, which deserves full respect, is neither diminished nor lost as a result of illness. Every health professional must therefore share in genuine training to safeguard the person's dignity with the maximum respect, together with the team providing care.
The patient's acknowledged preeminence requires that attention be paid to all his human problems that preeminence cannot be displaced as something lacking importance. Attention to the physical, psychological, social, and spiritual needs of the terminally ill demands of health professionals that the quality of care be the result of technical competence and human sensibility. To this end it is necessary and appropriate for the healthcare team for the terminally ill to be interdisciplinary in character.
The health professional must facilitate for the terminally ill person all that will contribute to his physical and moral well-being and foster humanity in care under two aspects: technology/science and relationships. In this way the patient will never be treated just as a means whose destiny is to achieve an end.
2. To Receive Personalized Care
Each person is unrepeatable and unique and responds with his own style to the vicissitudes of existence and life crises. The human being, while endowed with freedom, is, however, conditioned by a series of circumstances: lineage, age, personal biography, sociocultural background, beliefs, etc. It is on the level of feelings where man faces illness and the problem of death. At this time personality traits, which may appear masked in other situations display themselves differently.
Every human being reacts with a certain fear to disability, diminished capacities, sometimes humiliating dependence, loneliness, and uncertainty as to the manner and time of death. The team assisting the terminally ill must be alert to the hidden or manifest signs by which the patient displays his fears so as to provide him with consolation or companionship, an encouraging word, without frivolity, or respectful silence, listening carefully to one who at a given moment wishes to encounter a friendly presence offering him the chance to communicate at a certain degree of depth.
The members of the healthcare team must be able to recognize the defense mechanisms which the patient brings into play to deny reality or cope with it.
When illness takes root in the individual and becomes chronic and the patient's state worsens, the hope of a cure gradually yields to the hope of being able to prolong life, if it can be lived with a certain degree of human quality. At the moment the sick person intuits or knows that the end is approaching, he maintains the hope of bearing it with dignity and wishes to preserve self- awareness, not lose reason, not provoke repulsion in others, see to it that his loved ones will not suffer or be in need in the future.
The patient has a right to be treated in his singularity as a person and not be reduced to a statistic. He has a right to have his hopes reinforced without deceit and, above all, to the assurance that he will not be abandoned, but taken care of physically, psychologically, socially, and spiritually, with all needed assistance both at the hospital and in primary care services. The healthcare team should allow the patient to manifest or conceal his fears and help him to overcome and accept the real situation according to his capacity and maturity.
3. To Take Part In The Decisions Affecting The Care Provided
In this right the patient's autonomy as a human person is defended; as a person he has the right to freedom and not to be coerced for any reason. This right may present itself under its positive or negative aspects; the former as mentioned in our statement presuppose greater maturity on the part of the patient and the healthcare team and are rooted in the duty to provide accurate and sufficiently understandable information.
The aspect we might call "negative" is the patient's right to refuse a certain treatment. We must stress that this right does not amount to the right to attempt on one's life with the help of the doctor or nurses or to subjective impulse or to turning physicians into automatons at patients' orders. The patient's right refers to being able to refuse treatment when a certain therapy or medical action may reduce his quality of life to a degree incompatible with his dignity or prove excessively burdensome for him. This right includes sufficient, truthful information, and explicit consent by the patient or his legal representatives, when involved (it is supported by the Spanish General Health Law of 1986, which affirms the right to refuse treatment unless this refusal produces harm to society and the right to choose among the different therapeutic options proposed [Articles 9 and 6, respectively]). In Catalonia these ideas have been incorporated into the Rights of the Patient as Client of the Hospital (cf. Articles 10 and 12), whose legal underpinning is in the corresponding Accreditation Orders (April 25, 1983 and July 10, 1991).
The terminally ill still have a capacity for greater fullness in being, in spite of their limitations. If the patient is capable of self-government, his desires concerning visits, comfort, and psychological and spiritual attention must be respected to the utmost.
It is important to discuss plans for care with the patient, or, if this is not possible, with the family, in an effort to respect tendencies, habits, and wishes shaping his identity as far as possible, provided they do not adversely affect others.
The Rights of the Patient as Client of the Hospital established by Catalonia's Generalitat [regional government] sets forth the question we are considering as follows:
The information supplied should give the patient sufficient elements for judgment to be able to participate actively and responsibly in the decisions affecting him. The patient must feel he is an integral part of his own process (Art. 7.2).
The patient shall also be given advance notice and informed, and must give his consent, before certain explorations are effected which by their nature may affect the individual's privacy, sensitivity, or modesty (Art. 7.2b).
4. The Necessary Means To Combat Pain Must Be Applied
The health professional must always strive to ease the patient's suffering insofar as required.
Pain is a twofold phenomenon: one part is the perception of sensation; the other is the emotional reaction aroused in the patient. It is necessary to pay attention to the non-pharmacological factors modulating the pain threshold. The most appropriate strategy for the treatment of pain is to conceive of an integral approach to the patient under all aspects: physical, psychic, social, and spiritual.
The pharmacological treatment of pain will be adjusted individually, in terms of pain's causes, intensity, and duration, with periodic evaluations, so that the patient will enjoy the greatest possible degree of well-being.
In the terminally ill with serious chronic pain the potential risk of addiction to opiates is irrelevant in selecting an analgesic therapy.
The health professional should do his best to prevent analgesic therapy from unnecessarily provoking a loss of consciousness in the patient.
5. To Receive Appropriate And Honest Answers To His Questions, With All The Information He Can Accept And Assimilate
When we consider the aspects related to information and communication in the situation we are examining that of the terminally ill patient we see that it is a difficult subject in practice.
In this situation information encounters difficulties, on the one hand, because bad news basically concerning death has to be conveyed and, on the other, because of the complexity of the elements comprising the situation (patient, family, and healthcare team).
It must be stressed that dying is a personal, intimate event belonging to the ill, just as their lives belong to them. The patient is not a problem separable from his personhood, life history, and surroundings. It is his whole self that needs help and calls for an individualized interpersonal relationship with someone who is, of course, scientifically trained, but who also assumes responsibility for the global difficulties of the ill.
The healthcare team will be adequate if capable of coping with the situation and willing to provide opportune aid. The problem of the sick to feel unwell means anguish, fear, many questions, and the need to communicate this state as well.
When we attempt to deal with care for the terminally ill, we realize that the problems arising often transcend their illness. All the people around them are in fact affected, the family and also the healthcare team.
The team may experience a feeling of failure, impotence, and lack of knowledge. Rather frequently it opts to keep the family informed while depriving the subject of this right, who is the patient, of such information. A certain conspiracy of silence enwraps the patient at the most difficult and critical moments. The patient may accept the situation or, on the contrary, rebel or show resentment or aggressiveness.
The healthcare team must reflect on the following points, among others:
The relationship with the patient: adult or infantile;
Respect for the patient's right to be informed (lying is inadmissible);
The degree of communication and an attitude of listening and respect;
The quality of information: gradual, understandable, continued, and truthful;
The degree of peace and personal serenity in communication, so that the patient's tension and anguish will not increase.
The manner in which the family can be brought to participate adequately, if appropriate for the patient, must be considered. We must avoid the mistake of thinking that information is a matter of precision. In reality, it is an entire process including support for the patient in the course of possible changes in the illness and in treatment.
6. To Maintain A Personal Scale Of Values And Not Be Discriminated Against Because One's Decisions May Be Different From Those Of Care Providers
Intimately linked to the concept of dignity is awareness of oneself and of the values which have given meaning to one's existence. The person as a moral agent has an awareness, which is the final reference point in decisions on moral values. No one can take the place of this conscientious decision in the adult, conscious person, and no one has the right to coerce, either openly or secretly.
If the technical, diagnostic, and prognostic dimension belongs to medicine, the perception of what is good or bad for the person, and, in the final analysis, the quality of life, corresponds to the patient. He should listen to the explanations he is given. The doctor and healthcare team must have assurance of a sufficient degree of comprehension, but only the patient can say whether he dares to give meaning to his existence with a certain quality of life or dares to face up to the burdens entailed by a given therapy with the help offered him.
It should be recalled that, although no one has the right to impose his criterion on the life of another against the latter's will, no one has the right to discriminate against a patient either because he has chosen a therapeutic option not to the liking of the doctor or the healthcare team.
In any event, the health professional has the right to conscientious objection when the patient's attitude or decision is contrary to his ethical principles. In that case he will refer the patient to a colleague or an institution, with the previous agreement of the parties, always maintaining the maximum respect for the personhood of the patient.
7. To Maintain And Express Faith
Starting from religious freedom and freedom of conscience, and with the will to offer each sick person integral care, we must attend to spiritual needs.
Perception of and assuming responsibility for these needs facilitate understanding of the person and help him to find the serenity and peace offered by beliefs or philosophical convictions giving meaning to life.
Healthcare facilities must have adequate means available, both human and material, to respond to spiritual needs. Pastoral services, integrated into the hospital and collaborating with other professionals, can help to accompany sick people at critical moments when support is needed.
This attention, which is always important, can help the terminally ill in particular to take stock of their lives and frequently rediscover the inner peace enabling them to cope with their experience.
Sensitivity and respect for beliefs and philosophical convictions foster the relationship of different professionals with the sick and promote trust. Especially at the final stage of life, the sick need comprehension, which liberates and allows them to see life with confidence and hope.
The ill need to heal the wounds deriving from their personal histories, find meaning for life in this situation of suffering, reconcile themselves, feel accepted and accept themselves, and take on the losses succeeding each other throughout a lifetime.
The healthcare team must know the patient's religious and ethical beliefs which may influence medical decisions. It is quite important to know how the patient perceives life and death. The people who are at peace with themselves and accept death are more likely to express their real preferences.
When possible, the health professional must get the patient to discuss these preferences with the members of his family. The objective is for the family to feel comfortable with decisions. When the patient dies, the family remains and must be capable of living with the circumstances surrounding the death of their loved one.
8. To Be Treated By Competent Professionals With Communications Skills Who Can Help Patients Face Death
Above all, the healthcare team for the terminally ill must have human sensitivity: a capacity to listen, assimilate, and speak of the problem without fear of commenting on limit situations which are highly charged emotionally. Its attitudes cannot be rigid, inflexible, or authoritarian. Personnel must be carefully selected and should receive progressive training and qualifications. Group meetings, discussing cases, psychological guidance, care planning, and good organization are essential elements.
The personal state of the members of the healthcare team cannot be overlooked. The emotional burden connected with follow-up of the terminally ill has repercussions on the private life of team members. They need attention to neglect this would be a serious mistake.
The human quality of a hospital depends on the relations between patients and health professionals and on those of the latter with one another. As in every human relationship, there are difficult and critical moments for one member or the whole team. The team relationship includes an element of group therapy, whenever needed. It sometimes happens that one or several of the team members themselves may be hindered by their feelings or problems, making it harder to relate to the patient at a given point.
To help the patient cope with death also means the capacity to face up to one's own death and limitations, or "passivities," to use the language of Teilhard de Chardin.
In this way one gradually acquires the maturity and serenity required by verbal and nonverbal communication with the terminally ill. Verbal communication means sensitivity so as never to give bad news in a brutal manner; it demands intelligible language which the patient can understand; it must offer help by solving problems worrying the patient or making possible adjustment to a loss. Communication should be open in character; i.e., it ought to avoid bruising, rigid phrasing, enabling people to speak of the situation without thereby implying an irrefutable condemnation.
The components of nonverbal communication are:
space, in an appropriate place, tranquil and comfortable, for communication to occur;
listening, marked by an attitude of interest, without displaying distraction or hurry;
affection, with the sharing of feelings;
drawing near, by sitting beside someone, looking in that person's eyes, using physical contact as a nonverbal form which is basic to communicate security and well-being to the patient.
Death is the same for all, but we do not all situate ourselves in the same way in the face of it. No two people die alike.
A limit situation permits a coming to awareness posing anew the meaning of life. A prolonged illness changing our vital rhythm and causing us to feel diminished makes us realize that finitude is not an idea and that death may be close to us.
Feelings of depression, anguish, fear, isolation, frustration, abandonment, and uselessness always accompany to some degree the patient with a fatal diagnosis.
To allow the patient to express the feelings oppressing and threatening him is to help him to accept his real situation and to accompany him at the decisive moment.
To allow him to express his pain will make final acceptance easier of the moment when he will lose everything and the persons he loves.
Negative feelings become aggravated with isolation and lack of communication, and to help him to express them in a respectful climate will undoubtedly relieve the patient in all instances.
9. To Receive The Consolation Of Family And Friends He Wishes To Accompany Him Throughout The Process Of His Illness And At The Moment Of Death
Death evidently has an individual, personal dimension. We die alone, and each dies his own death. But this individual facing up to death must not be confused with isolation. The terminally ill may legitimately ask not to be bothered, but no one wants to die rejected by others. Noises, laughs, and voices should be avoided, but systematic isolation is not recommendable.
The fact of being surrounded by loved ones, with greater communication among them and more frequent information for the family from the healthcare team on the patient's state and symptoms, makes death more normal.
The deeply humane quality of the relationship between the healthcare team and the patient must also be reinforced to the utmost. The intimate and inevitable solitude of the dying can be more bearable as a result of the human warmth of those providing care.
When human, psychological, and, for the believer, religious aid is offered, the encounter with the truth of death proves highly positive.
Patient and family should be regarded as a unit to be treated by the healthcare team. Family and patient should, ideally, help one another. The healthcare team ought to assist family members and friends to maintain an open, trustful posture. A lack of serenity in the family increases the chances that the patient, too, will not be serene.
In order for the patient to receive aid and consolation it is appropriate for the healthcare team:
to make itself available to both patient and family, choosing a tranquil, unhurried place to sit and speak of the topic with naturalness and without dramatizing, whenever they wish;
to clarify doubts on the patient's evolution and treatment, feelings of fear, uncertainty, depression, anxiety, or loneliness;
to make decisions on therapy with the patient and the family, when possible;
to react in time to the patient's and family's need for spiritual support;
to take into account the actual context of the family and identify the spiritual and emotional resources of both patient and family so as to provide support to the former;
to facilitate the patient's relations with relatives and friends, making suggestions on how they can communicate with and accompany him;
to stress to family members the importance of their presence alongside the patient and instruct them on the tasks connected with care, reinforcing the family's role in therapy to the utmost.
Relatives usually feel better if they can do something; our objective will be to integrate them into the process to the maximum degree so that the patient will reach life's end accompanied in every respect.
10. To Die In Peace And With Dignity
At the most human time in life, which, paradoxically, is that of death, the person needs affection and companionship, with recognition of the right of die in dignity, understood to be a rejection of a forced, exceptional arrangement of existence. Useless, obstinate forms of care can even become inhuman and cruel when, against the individual's and the family's will, experimental tests are carried out on the dying.
The patient ought to die in a family environment, if possible; if not, death should take place in surroundings which most resemble the home.
Every man has the right to live through his own death. It is his last chance to exercise his own freedom. This freedom must be respected by the healthcare team, relatives, and the hospital itself.
Death in peace proves more dignified when the patient undergoes death with lucidity, not repressing anguish, but overcoming it through dialogue and sincere communication giving him reconciliation, peace, and inner harmony.
11. After Death the Body Should Be Treated with Respect
12. The family must be correctly informed about the circumstances of death and receive administrative, psychological, and spiritual help to cope serenely with the period following death
In the event of autopsy, organ donation, or even the consignment of the body for research, it should be treated with respect.
The terminal phase is a particularly difficult time for the family at which the defense mechanisms it has developed are called into question.
The family has a right to be present in the final moments and to have time to say goodbye so as to avoid negative feelings which would obstruct the unfolding of mourning (e.g., anxiety or resentment over not having been able to see or touch their loved one).
The family has a right to be helped administratively (e.g., with transfers) so that greater anxiety will not be added as a result of disorientation at that difficult time.
When the outcome takes place, the family has a right to correct information from the healthcare team about the situation prior to death.
The family has a right to ensure that the body is conserved in a dignified place before burial.
After the death the family has a right to be helped to undergo mourning and to express its own feelings so as to be able to accept the real loss.
The seriousness of their affliction is related to the intensity of their interaction with the deceased and the latter's role in their lives; as a result, violent imbalances are sometimes observed on the part of family members.
Relatives sometimes experience feelings involving emptiness, uselessness, despair, anxiety, insomnia, tension, tiredness, irritability, worry, etc.
The family should be supported so as to express its intense and confused feelings, which may be laden with remorse over imperfections in their relationship to the person (e.g., incomprehension and misunderstandings).
The effects of distress begin to lose intensity in the first six weeks after death, and most relatives recover after several months; but some of them manifest atypical forms of sorrow which can seriously incapacitate them for the demands of social life; as a result, they must be assisted and helped to form new relationships and adapt to a new situation, which on occasion brings with it a radical change in their daily routine.
We thank the following persons for making this text possible with their contributions.
Anna Balil Gilart, M.D., Hospital Arnau de Vilanova, Lleida
Lidia Buisan Espeleta, M.D., Hospital de la Creu Roja (L'Hospitalet de Llobregat)
Ramon Caralt Roca, Chaplain, Ciudad Sanitaria i Universitaria de Bellvitge
Marcell Carreras Oliveras, Chaplain, Hospital General de Manresa
Luisa Cid Vazquez, Social Worker, Hospital de la Santa Creu Sant Pau, Barcelona
Joaquim Esperalba Iglesias, M.D., Hospital de la Santa Creu i Sant Pau, Barcelona
Salvador Esteban Moreno, M.D., Fundacion Torres Falguera, Terrassa
Maria Eugenia Fuste Rich, Psychologist, Hospital de Sant Joan de Deu Esplugues de Llobregat
Manuel Gallen Castillo, M.D., Hospital del Mar, Barcelona
Maria Gasull Vilella, Nurse, Hospital de la Santa Creu i Sant Pau, Barcelona
Maria Francisca Isern Catala, Nurse, Hospital de Sant Joan, Reus
Jose Linares Sanchez, Chaplain, Institucio Salus, Barcelona
Alejandro Lozano Blanco, Chaplain, Centre Geriatric Municipal, Barcelona
Miguel Martin Rodrigo, Chaplain, St. John of God Brother Hospital de San Joan de Deu Esplugues de Llobregat
Carmen Valverde Ruiz, Nurse, Hospital Arnau de Vilanova, Lleida
Joan Vinas Salas, M.D., Hospital Arnau de Vilanova, Lleida
Coordinator of the Work Group:
Francisco Sola Pagola, St. John of God Brother, Diocesan Delegate for Pastoral Care in Health, Barcelona
Francesc Abel Fabre, S.J., physician and Director of the Borja Bioethics Institute, Sant Cugat del Valles, for his expertise in reviewing the final text.
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