Palliative care, accompaniment and the ethics of research

Explain what palliative care and accompaniment bring to a dying person and their family, apply the duty of professional secrecy to the dying patient, and state the rules that govern disclosure and research.

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Why this matters

A diagnosis that cannot be cured does not end the professional’s duty; it changes it. From that moment the question is no longer only how to treat the disease, but how to relieve the suffering of a person who knows, or suspects, what is happening. Palliative care and accompaniment are the answer the health professions give to that question. At the same time, the dying patient is the most vulnerable holder of a secret: he is sleepy, confused or too weak to check who is reading his file, while the family, the students and the researchers all want to know. This section holds the two duties together because at the bedside they arrive together.

What you need to know first

You should be comfortable with the difference between curing and caring, with the definition of professional secrecy as the duty to keep confidential the information obtained from a patient, and with the idea that consent must be free and informed. Nothing else is needed: the statutes, the numbers and the research rules are all given in the detailed explanations.

Words to know (5)

Palliative care: Specialised medical care for a person living with a serious illness, focused on relieving symptoms and stress and on treating physical, psychological, social and spiritual suffering, so as to improve the quality of life of the patient and the family. A patient with advanced cancer receives morphine for pain, and the family receives a telephone number for the night.
Accompaniment: The approach that remains present with the patient as a person and also supports the family and relatives, at home or in an institution, including the training and support of caregivers and volunteers. The nurse shows a daughter how to give mouth care and tells her what the last days may look like.
Professional secrecy: The obligation imposed on a professional to keep confidential the information obtained from a patient while practising the profession, and not to share it without a legitimate reason. A nurse does not tell a neighbour which patients are on the ward, or why they are there.
Confidentiality: Keeping something private and secret from everyone except those who are allowed to see it; in health care it protects the patient’s personal information. A file left open on a desk where visitors pass breaks confidentiality even if no one reads it.
Free and informed consent: The patient’s agreement, given freely and after the professional has explained the treatment, the expected benefit and the risks, so that the choice is really the patient’s. A patient signs the research consent form only after the nurse has explained what will be collected.

One idea at a timeIdea 1 / 5

In one sentence Palliative care is specialised medical care that relieves the symptoms and stress of a serious illness and treats the total suffering of the patient and the family.

Palliative care treats the whole suffering, not only the disease

Palliative care is specialised medical care for a person living with a serious illness. Its first work is relief: it removes or eases the symptoms and the stress that the illness produces. But the notes insist that the body is not the whole story. The team also takes into account physical, psychological, social and spiritual suffering, so that what is treated is the total suffering of the person. The goal is to improve the quality of life of the patient and of the family, who carry the illness with him. This care follows the needs of the patient, so it is appropriate at any age and at any stage of a serious illness, and it can be given at the same time as treatment that aims at cure.

For example

A man with advanced cancer still receives chemotherapy. He is breathless, frightened and cannot sleep. The palliative team adds treatment for the breathlessness, a plan for the night and a conversation about his fear. The chemotherapy continues; the suffering is treated at the same time.

Think of it like

Palliative care is not the opposite lane of a road that you enter only when curative treatment leaves it; it is a second lane opened alongside the first. The comparison stops there: unlike traffic lanes, the two can be used by the same patient at the same time and in changing proportions.

Pause and check yourself

The family asks: does starting palliative care mean that you are giving up on him?

Show the answer

No. Palliative care is based on the needs of the patient, is appropriate at any stage and can be provided along with curative treatment. It adds a layer of support for symptoms and stress; ending curative treatment is a separate decision, taken with the patient.

Read detailed explanations

From the hospice to the concurrent model: how palliative care is organised and where it came from: A properly organised palliative service is a team before it is a place: the notes describe a specially trained group of doctors, nurses and other specialists who work with the patient’s other doctors to provide an extra layer of support, and the unit of care is the patient and the family together, because the illness is lived by both and the family carries the daily work. The modern form of this approach is usually traced to Cicely Saunders, who opened St Christopher’s Hospice in south London in 1967 and insisted that pain has physical, emotional, social and spiritual components that must be assessed separately. The World Health Organization adopted the term in 1990 and restated the definition in 2002: palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Two practical consequences follow. First, morphine and the other strong analgesics are legitimate medicines in this setting, and the fear of dependence must never be allowed to leave a dying person in pain. Second, the concurrent model — palliative input started at the diagnosis of a life-limiting illness and increased as the disease advances — is now the standard, because waiting for the failure of curative treatment leaves the patient and the family without support during the months when they need it most.
The two texts and the three sources: why the duty binds even when nobody is watching: The duty is older than any hospital, and its wording has been argued over for twenty-four centuries. The Hippocratic Oath states: “What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself holding such things shameful to be spoken about.” The Oath allows no exception. The World Medical Association, founded in 1947, took the opposite route in its International Code of Medical Ethics, adopted in London in 1949 and amended several times since: it is ethical to disclose confidential information when the patient consents to it or when there is a real and imminent threat of harm to the patient or to others and this threat can be only removed by a breach of confidentiality. The difference between the two texts is the difference between a vow and a rule with conditions, and your practice sits in the second. The notes then give the three sources of the high value placed on confidentiality, and they are not three synonyms. Autonomy: personal information about a person belongs to that person, and those who learn it through a test or a consultation are bound to keep it unless the person authorises disclosure. Respect for others: preserving privacy is one of the ways we show that a human being deserves respect, and because people differ in how much privacy they want, the professional must determine what this patient wants kept secret rather than assume that everyone wants what he himself would want. Trust: patients have to reveal intimate information to strangers in order to be treated, and they will withhold it if they have no reason to believe that it will be kept; that trust rests on the ethical and legal standards the profession is expected to uphold. The practical point of separating the three is that they fail differently. A breach of autonomy is a wrong done to the patient’s ownership of his own story; a breach of respect is an insult; a breach of trust dries up the information the next clinician needs, and damages patients who were never named in the file. The WMA Declaration on the Rights of the Patient, first adopted in Lisbon in 1981, adds the operational detail: identifiable information must be kept confidential even after death, disclosure to other health professionals is on a strictly need-to-know basis unless the patient consents, and human substances from which identifiable data can be derived must be protected in the same way as the record itself.
What a breach costs, and where research stops being a reason: A breach of medical confidentiality exposes the professional to four distinct kinds of sanction, and beginners usually know only the first. Civil sanctions: a civil action in the tort of defamation may lie against a practitioner who, without authorisation or legal duty, divulges medical secrets to third parties; defamation is any statement, written or spoken, that lowers a person in the eyes of right-thinking members of the community, and if the patient proves that the statement was defamatory, that it referred to him and that it was made in public, the court may award financial compensation. Criminal sanctions: defamation is also an offence under section 305 of the Cameroon Penal Code, which punishes whoever destroys the reputation of another by imputations, direct or indirect, of facts he is unable to prove with imprisonment from six days to six months and a fine from 5,000 to 2,000,000 CFA francs, or with only one of those penalties; the section applies as well to defamation of the memory of a deceased person with intent to injure the honour or reputation of living heirs, spouse or universal legatee. Disciplinary sanctions: any professional who fails to comply with the Code of Ethics is subject to the Disciplinary Board constituted in accordance with the law, and a complaint against a doctor must first be investigated by that Board. Administrative sanctions: they fall on staff of public hospitals, where the hospital is vicariously liable for damage caused by its public officials, including doctors, interns, residents and students. As a civil servant the doctor is exposed to four groups of sanctions: the first group, written warning and blame with inscription on the documents; the second, delay in advancement for one year and lowering of one or two grades at most; the third, lowering of class and rank and temporary dismissal for not more than six months; the fourth, dismissal. The modes of breach are ordinary rather than dramatic: oral indiscretion in the corridor, publication in a scientific journal of details that identify the patient, photographs, voice recordings, and a file left within reach of visitors. Notice that publication is on that list, which is why the sentence about public interest, including research interests, cannot be read as a blanket authorisation. Three further rules keep the research question honest. Certificates are drawn up at the request of the interested parties and given to them; the doctor who issues the certificate is not bound to secrecy towards his own client, and disclosure of the certificate can come only from the patient. Statutory exceptions exist — declarations of death, declarations of contagious and epidemic diseases, and denunciations of certain crimes such as poisoning, abuse and assault on children, sequestration and criminal abortion — and each one names the authority that may receive the information. Finally, the premarital examination paragraph in the notes contains a duplication that must be corrected, because it lists sickle-cell anaemia and thalassaemia and then sickle-cell anaemia again: the standard pairing is haemoglobinopathies (sickle-cell disease and thalassaemia) plus infectious diseases (hepatitis B, hepatitis C and HIV/AIDS). The rule that follows matters more than the list: when the professional has been consulted by one of the fiancés, he must keep the secret, and there is no secret to keep only when the two agree to consult together and to communicate the findings before the marriage.

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Palliative care, accompaniment and the secret of the dying patient

Two duties meet at the same bedside: relieving the total suffering of a person who will not recover, and protecting what that person has confided. Select any part to read what it is and why it matters.

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01 / 4Palliative care

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Palliative care

Palliative care is specialised medical care for a person living with a serious illness, focused on relief from the symptoms and the stress of the illness and on the total suffering of the patient — physical, psychological, social and spiritual. The notes make two points that beginners miss: the goal is the quality of life of the patient and the family together, and this care follows the needs of the patient, so it is appropriate at any age and at any stage and can be given alongside curative treatment. It is delivered by a specially trained team working with the patient’s other doctors. It is therefore not a signal that treatment has been abandoned.

Teaching schematic, not a legal opinion. The exceptions to professional secrecy vary with jurisdiction and with the applicable professional code; here they are grouped as the supplied notes present them for Cameroon.

Key points to remember

Palliative care relieves the symptoms and stress of a serious illness and treats physical, psychological, social and spiritual suffering, to improve the quality of life of the patient and the family; it is appropriate at any age and any stage and can be given alongside curative treatment.
Accompaniment addresses the patient as a person and also the family and relatives, at home or in an institution, and includes the training and support of caregivers and volunteers.
Professional secrecy is the obligation to keep confidential the information obtained from a patient; it does not end at death, and identifiable information about health, diagnosis, prognosis and treatment remains protected.
Secrecy opens only through explicit consent, a legal provision, or a real and imminent threat that nothing else can remove — to the extent needed, to those who need to know, and traceably in the record.
Research on patients or their data requires a genuine question, a protocol, prior review by an independent committee, consent where required — and otherwise a documented committee waiver — the minimum necessary data and the protection of identifiers.

Go deeper

Worked example

Research access to the files of patients who have died. A hospital team is writing a study on the last two weeks of life. The protocol asks for the complete files of every patient who died on the ward in the past year: name, address, diagnosis, family contacts and the nurses’ notes. A resident is asked to start collecting the data on Monday. She notices that one of the patients was her neighbour, and that the family never told the other children the diagnosis.

Separate the two questions: is the study worth doing, and is this way of collecting the data permitted? The first is a scientific question for the protocol and the committee. The second is an ethical and legal question for the same committee, and it cannot be settled by the resident’s goodwill.
Check that the protocol was reviewed and approved before any file is opened. Research on patients or on their data has to be examined by an independent committee before it begins; a study that is already collecting is a study that has not been approved.
Apply the minimum-necessary rule to the variables. A study about the last two weeks of life does not need the address, the family contacts or the nurses’ personal notes. Each variable must be justified by the question; what is not needed is not collected.
Replace identifiers as early as possible and keep the key separate. Names, addresses, dates of birth and the names of relatives are identifying data; coded data with a separate list is the standard, and the researcher who can still identify a participant must have a reason and a rule for it.
Declare what you have discovered and stop where you must. The resident’s discovery about her neighbour is not a reason to change the data; it is a reason to declare the conflict and to ask the committee how the case is to be handled. Confidentiality also continues after death, so the family’s silence towards the other children is not hers to break.

The study may go ahead, but only through the committee, with a protocol approved before collection, the smallest set of variables, identifiers removed as early as possible, and the resident’s conflict declared. The two duties of this section do not compete here: the same respect that obliges the researcher to protect the dead patient’s file is what obliges the team to accompany the living family.

Common misconception

The usual beginner’s mistake is to treat confidentiality as a matter of politeness that can be relaxed whenever the person asking seems sympathetic, and to treat research as automatically ethical because its aim is knowledge. Both mistakes have the same root: confusing a good intention with a permission. Secrecy opens only through the patient’s explicit consent, a legal provision, or a real and imminent threat that nothing else can remove; research opens only through a protocol, committee review, consent and the minimum necessary data. Intention is not an authorisation.

Check your reasoning

Think of a death you have witnessed or heard about. Was the family told what was happening, and by whom? Was the patient asked what he wanted to know and who might be told? Which of the two duties in this section was neglected first, and what would you have done?

Reveal an answer

Most people find that the symptom control was correct and the communication was missing: nobody had asked the patient who might be told, and nobody had prepared the family for what the last days would look like. The neglected duty is usually secrecy, because it fails silently — nobody complains when a file is left open on a desk. Name the specific omission (no consent for disclosure, no explanation to the family, no plan for the night), because a named omission can be corrected on the next shift, while a vague feeling of unease cannot.

Where this comes from

BMS 115 Health Care Ethics lecture notes (Mme Bakume Jessey) · Clarification of terms — palliative care, accompaniment and euthanasia (notes lines 83–89); professional secrecy — definition, sources of confidentiality, disclosure, sanctions and special circumstances (notes lines 296–362); teaching plan, Week IV — care for the dying patient: palliative care, confidentiality, professional secrecy, medical research and nursing care ethics.
BMS 115 Health Care Ethics lecture notes (Mme Bakume Jessey) · Corrections applied: the premarital paragraph repeats “sickle cell anemia and thalassemia and sickle cell anemia”, taught here as haemoglobinopathies (sickle-cell disease and thalassaemia) plus infectious diseases (hepatitis B, hepatitis C, HIV/AIDS); “public interest, including research interests” is taught as a reason that still requires a protocol, committee review and consent, because the same notes list publication of identifying material among the modes of breaching secrecy.
WHO — Palliative care (definition, 1990; restated 2002) · the WHO definition, the four domains of total suffering and the concurrent model used in the detailed explanation.
WMA International Code of Medical Ethics (London 1949, as amended) and WMA Declaration on the Rights of the Patient (Lisbon 1981) · the disclosure clause quoted in the notes, the strictly need-to-know rule for other health professionals, and the protection of identifiable data after death.
WMA Declaration of Helsinki (1964, last revised 2013) and WHO Casebook on Ethical Issues in International Health Research (2009) · prior review by an independent committee, free and informed consent and the minimum-necessary rule in research; the Casebook is named in the reference list of the supplied notes.
Cameroon Penal Code, section 305 (defamation) · Quoted in the supplied notes, lines 315–318, including the penalty range and the extension to the memory of a deceased person.

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About this course and its sources

Bilingual lessons organised from the supplied BMS 115 Health Care Ethics lecture notes (Mme Bakume Jessey, St Louis University Institute Douala) and the international texts those notes reproduce — the Universal Declaration of Human Rights 1948, Pacem in terris 1963, the African Charter on Human and Peoples’ Rights (drafting launched at Monrovia in 1979 by Decision 155; adopted 1981; in force 21 October 1986), the 1959 Declaration of the Rights of the Child, the ICN codes of 1953 and 1973, and the Cameroon code of ethics of 3 March 1989. The short guided notes and the longer “Read detailed explanations” panels are written as two different jobs: the notes state one idea plainly, and the detailed panels add mechanism, vocabulary and worked judgement that the notes do not contain. Diagrams are original teaching schematics. Ethics, nursing and French-language review are pending.