The doctor-patient relationship, as has been extensively analysed, is the foundation of medical action even in end-of-life care. As the disease worsens, a doctor is asked to discuss and disclose the difficult decisions to be made
(i.e. palliative therapies, experimental therapies, work choices, invalidity or legal protection practices, hospitalization or stay at home, need for vital support, etc.), keeping in mind as much as possible the patient's will. Though it is difficult to predetermine and plan answers to any ethical doubts in terminal phases, they can certainly mature, however, given an authentic therapeutic relationship in every single situation. And an authentic therapeutic relationship is one that assumes professional abilities and respect for the patient on the doctor’s part and trust in the doctor’s competence on the patient’s part.
In many cases, nevertheless, the doctor-patient relationship is modified by the fact that the patient is unable to make one’s own decisions. These situations have increasingly become frequent today both due to technical development, which can extend life even when consciousness and/or communication are compromised, and the ageing of the population, resulting to a consequent increase in the prevalence of diseases that cause cognitive impairment (e.g. Alzheimer's disease). It has been calculated that more than 40% of the hospitalized patients are in a condition of severe mental function impairment and the percentage rises if other communication deficits are to be included. Clinical decisions in these cases (e.g. artificial nutrition, interventions surgical, intubation, etc.) are a source of psychological suffering especially for family members, and doctors as well.
There is a risk, however, for doctors to adopt a detached approach and total delegation to family members, or to automatically orientate themselves for the most protected option from a legal point of view, even at the cost of a clearly disproportionate approach and source of additional suffering for the patient.
But people with severe chronic disabilities are also more likely to have therapeutic abandonment, also due to the lack of preparation of health professionals to adequately communicate with them.
Who then should be requested to formally "speak for the incapacitated patient", or operate any personal choices on his behalf or give consent to medical check-ups or treatments? In Italy, an adult person who is unable to understand and choose may be appointed by virtue of a court order a legal representative to act on behalf of the person’s interests. In the event of a total, congenital or acquired incapacity (we speak of a subject who is invalidated or in conditions of "habitual mental sickness"), a guardian is appointed; or if it is a case of partial incapacity (i.e. an unfit subject) a curator—or as recently instituted—a support administrator, who can also be designated by the patient, in anticipation of his or her eventual future incapacity.
While the figure of the guardian substantially assumes the tasks that a parent has in relation to a minor child, the new figure of the support administrator was introduced in our legal system (LG n. of 9 January 2004) with the aim of limiting as little as possible the person's ability to act in whole or in part without autonomy, ensuring however the temporary or permanent support the patient needs.
In the title of this intervention, the term "guardian" refers generically to those who are formally asked, "to speak for the patient". Often it is a close relative, rarely instead of a person not related to the patient by family proximity, who in this case is generally a suitable professional or an institutional figure (i.e. a lawyer, social worker, mayor, legal representative of an association or foundation, etc.) appointed by the tutelary judge. Whoever represents the patient is called to give an alternative judgment that takes into account the will of the patient himself (principle of autonomy) and, when not aware of it, of the patient’s best interest (principle of charity).
When the clinical decision-making process occurs through a tutor, it is not at all the same with that which matures in the dialogue with the patient. The threesome relationship, doctor-patient-guardian, that develops is very different and more complex than the normal doctor-patient relationship.
In the first place, even if juridically speaking, the guardian’s consent to medical acts is necessary and sufficient, it is a utopia to think that in this interrelation the guardian can only be a passive spokesperson for the patient, he is anyway an active subject, with his personality, his emotions and its own goals and values.
It is well-known that the opinion of proxies, even if they know the person well, does not always coincide with that of the person concerned. In most cases, many caregivers overestimate the patient's deficits. Emotional reactions can influence the decision-making process, particularly with regard to end-of-life care. It was pointed out that in one-third of hypothetical cases in end-of-life scenarios, the patient's and a close relative's judgments about treatments do not agree. Neither does predictive accuracy change even if the replacement decision maker is designated by the patient or has been able to discuss her or his preferences in advance with the guardian.
Prediction errors often represent the wishes of the family member for their loved one. In situations of acute incapacity, the fear of having to care for a seriously disabled family member or vice versa the inability to renounce a loved one can inevitably affect the choice of life support therapies. In situations of severe congenital disability or progressive degenerative diseases, the guardian instead finds him or herself making decisions in a context of habit and poor emotional involvement, but also of pain, losses and long-standing family dynamics. This different emotional participation, as well as the values and needs of the family, must be taken into account by the care team (including social workers, chaplains, volunteers who can provide support) and taken into consideration in the therapeutic relationship.
Furthermore, if the majority of patients want to be fully informed by the doctor about their diagnosis and treatment, but the decision-making authority in the clinical process changes considerably, then negotiating on who makes the decision becomes even more complex, especially if the therapeutic alliance is mediated by a guardian. The doctor, in addition to considering whether a choice is consistent with the patient's wishes and interest, must also consider the decision-making role preferred by the guardian. That is, information about the person’s life; family and emotional ties with the patient; also the legal relationship strength (in the case of a guardian or support administrator). On the other hand, it is ethically appropriate for the doctor to take a more active decision-making role if he has ample knowledge of the patient.
Again, if many aspects of current health care today seem to be undermining the doctor-patient relationship –lack of time, continuity, too much focus on technology than on personal relationships — then, even more, does the doctor-guardian relationship face particular challenges. In many hospital cases, a doctor or his substitute decision maker may never have met the patient before the loss of her or his decision-making capacity.
Building a relationship with a "guardian" takes time, which is often lacking in hospital wards and intensive care units. Thus, conflicts arise above all, from the fact that the doctor and the guardian have not had the opportunity to communicate effectively with each other and build a relationship of mutual trust, before making critical decisions regarding palliative care, hospice care, and life support therapies. Often, even when there is a legally designated representative, in practice the doctors find themselves communicating and relating to many relatives for each patient. Therefore, consensus becomes even more problematic regarding difficult decisions because of the presence at times of a seriously ill relative that may increase pre-existing family conflicts.
In conclusion, to guarantee quality of care and dignity of life until the end even for the "incapable" patient, we must, above all, make all efforts to create conditions in which the patient’s autonomy can be manifested to its maximum, to risk as little as possible its exposure to the projection of the wishes and values of the physician and guardian. Everyone has the right to be recognized as a person, to be understood and treated in their individuality and to be in some way a protagonist in the therapeutic process.
What can be done?
In the first place, even if the person with limited cognitive abilities is unable to understand the contents of an informed consent form, that person can still be able sometimes to express choices and preferences consistent with her or his reference values. However, to understand the patient’s therapeutic and relational needs (also expressed through gestures, posture, mimicry, volume and tone of voice, behavioural disorders, etc.), one requires the ability to adopt a communication at its functional level. For this reason, specific training is necessary for health workers, and those practising help professions, but also for "guardians" as well.
Furthermore, in chronic or degenerative diseases that involve a progressive loss of decision-making capacity, the physician must be able, without losing hope, to prudently help the patient prepare for the future by discussing with her or his preferences about treatment goals, prognoses, treatment options, as well as the need for support administration.
The doctor-patient-guardian relationship is also and always will be a challenge of humanity and mutual listening quality. An open, trusting and continuous communication are needed. The doctor and "guardian" should be able to mutually express and share knowledge and uncertainties, desires and fears, to avoid excesses of treatment and diagnostic or therapeutic abandonment on the other hand as well as false convictions or misunderstandings about the purposes of the treatment or non-treatment.
It is important to share salient points of the most delicate decision-making processes and to involve as much as possible also other relatives and people close to the patient. The sharing and collaboration of all those involved are necessary to seek the good of the "incapable" and prevent feelings of guilt, misunderstanding and conflicts that can involve members of both the family and the care team.
In the current complex health organization, human qualities, motivation and adequate training (scientific, technical, and ethical) at the individual health workers’ level are not sufficient. There is a need for organizational actions, educational support and innovation at the structural level, which would involve also people dealing with legal protection, guardianship, and support administration.
MARIAGRAZIA ARNEODO *
*Opera Don Guanella, Roma
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