Case Study, Mrs McCall
You are a second year student nurse on placement in a care home. Mrs Mary McCall aged 92 is a widow who has resided in the care home for the past 2 years. She is immobile due to chronic rheumatoid arthritis and is dependent on nursing staff to assist with many of her activities of living. Mrs McCall has no cognitive impairment and enjoys being regularly visited by her two daughters and grandchildren. She has developed a persistent cough and attended the hospital for several investigations. Mrs McCall’s GP has arranged to visit the home tomorrow to inform her that she has carcinoma of the right lung. Mrs McCall’s daughter has approached you to ask that you ensure her mother is not informed of her diagnosis.
As a second year student nurse caring for Mrs McCall, discuss the professional, ethical and legal issues arising from this scenario.
Introduction
I note first of all that Mrs McCall has no cognitive impairment and is in the home because she is immobile, not because of senility etc.
Secondly, as a student nurse, although I may carry a message on behalf of the daughter to my seniors, or the doctor concerned, the decision as to whether or not Mrs McCall is informed is not mine, although, together with the rest of the care team I do have a duty of care and am accountable to do all I can to provide the highest standard of effective care. This includes protecting the patient’s rights and challenging poor practice ( page 10, ‘Guidance and care for older people , NMC, 2009) My priority must be what is best for the patient, and giving her autonomy and independence, whether or not this fits in exactly with the rights and wants of relatives. The University of Ulster web page ‘Cancer Nursing Priorities: a Delphi Approach’ places communication, information and psychosocial needs as being priorities.
In considering the medical and ethical issues on this subject I have consulted various research papers as well as guidelines in the United Kingdom. Cancer ranks as the third highest cause of death worldwide, and accounts for about 12 % of all deaths recorded, according to Miyata et al (2004). Cancer is sometimes fatal and treatment can involve invasive procedures. This means that the important question of how, and if, patients should be informed of their diagnosis and possible prognosis, can pose ethical dilemmas. In some cultures disclosure is not routine.
Diagnosis and possible treatment
Lung cancer can be of various types and extent as described (1999) under the heading Lung Cancer Types, from Medical Communities.com It can be made up of undifferentiated small cells, a carcinoma of the surface cells or be an adenoma i.e. a cancer of the body of the organ. Possible treatments will be affected by the type of cancer and its spread. They will vary from radiotherapy, chemotherapy, resection or merely palliative care. The doctor will have been informed by histological and other reports as to the true nature of the condition. The test results should have enabled the doctor concerned to have decided upon one or more options for treatment possibilities. Squamous cell carcinoma can take years to develop into an invasive state. This type can present as a lung inflammation. Small cell cancers may have spread considerably before being diagnosed. Non-small cell cancers are more likely to be operable.
Ethical and Legal Issues
In the U.K. various guidelines are available. Especially important are those published by the Nurses and Midwives Council. In March 2009 they produced ‘Guidance for the care of older people’. On page 33 this states that ’You must not discriminate in any way against those in your care.’ On page 27 it says ‘You must act as an advocate for those in your care, helping them to access relevant health and social care, information and support”.
The Scottish Care Commission sets out a list of principles under which care is administered in Scotland. Similar principles will apply throughout the United Kingdom. They are that the care services, including of course care homes for the elderly, offer dignity, privacy, choice, and safety, a realisation of potential and equality and diversity. Many of these principles can be applied in this case. Mrs McCall is entitled to the dignity of being treated as an equal intellectually. She is entitled to privacy; that is, she should have been consulted before her daughter was informed of the diagnosis, and should have had the choice of deciding whether her daughter should be informed. She is entitled to make her own informed choices, but cannot do so unless she is told the true situation. She is entitled to realising her potential – in this case the best possible treatment and prognosis.
The document states quite clearly that services will be based upon clinical need alone – age doesn’t come into it. In paragraph 12 it points out how, even in the most complex of cases, appropriate treatment can have benefits. Paragraph 1.12 says
Each decision should be made on the basis of the individual clinical need,
overall health status, and the personal wishes of the older person (and, where appropriate, their carers).
In 2002 Elgar and Harding asked both law students and students of medicine whether cancer patients should be informed of their diagnosis and prognosis. Answers were measured on a scale from ‘definitely inform’ to ‘certainly not inform’. Almost all agreed that the patient should be correctly informed if he wished this, and the same was true of the majority regarding prognosis. However, if the patient had expressed a wish not to be informed only 35% of the law students and an even smaller number of medical students felt that the patient should be informed. Reasons behind this seem to have been concerned with the patient’s rights to make autonomous choices.
The scenario described does not mention how far advanced Mrs McCall’s condition was or what procedures might be considered to offer treatment. If any possibly curative or palliative treatment is to be offered or considered the patient could not give informed consent unless she was fully aware of the condition, prognosis and the pro and cons of any treatment.
According to the Royal College of Nursing Guidelines on ‘Informed Consent in Health and Social Care Research’ of November 2000:-
Informed consent is an ongoing agreement by a person to receive treatment, undergo procedures or participate in research, after risks, benefits and
alternatives have been adequately explained to them.
The same document discusses ‘consent by proxy’ (page 5), something that only has legal validity in Scotland and which might be considered in the case of someone with dementia, or with other mental impairment, but this is not the case here.
NHS Choices web page states that there is nothing in law to prevent a patient seeing their health records. It follows that Mrs McCall is entitled to know both her diagnosis and prognosis. It cites the Data Protection Act of 1998 as justification for this.
On page 397 of their 1980 book ‘The Elements of Nursing ‘Roper, Logan and Tierney discuss the matter of living wills. Had Mrs Mc Call made any declaration about future treatment when she entered the home? Record keeping is important and such records should be consulted. If Mrs Mc Call has made a living will or left other such instructions her doctor is bound to take such wishes into consideration.
What Patients Want
Research by Young Ho Yun et al (2004) has revealed that cancer patients are more inclined to want to be fully informed than their relatives might wish. Mrs. McCall may well belong to the majority who wish to be so informed. The authors also pointed to the importance of how this information is delivered. The same article also points out how attitudes have changed over recent years with many more modern doctors now believing that patients should be informed. This they linked to advances in possible therapies and an increase in ethical concerns about a patient’s right to take part in decisions about their future care. Mrs McCall will have been aware of the tests done and will be expecting the doctor to discuss the results. If the daughter’s request is carried out then she is asking the doctor to either lie or at least omit to tell the truth.
There are also decisions to be made about future care. The Regulation of Care (Scotland) Act 2001 made no distinction between care homes and nursing homes. Under the heading Care Homes for Older People, people are told that they need not move from a home when they become ill, but can if wished be catered for where they are. Any decision Mrs McCall makes about such matters will be affected by the amount of knowledge she has about her condition. The fact that she is advanced in age makes no difference.
In a Japanese study of 2004 (Miyata et al), it was not suggested that information be withheld, but rather that great consideration be given to how this is done.
The fact that Mrs McCall has not directly mentioned the matter does not mean that she is not aware of the possible diagnosis, especially if, as has been stated, she is fully aware of what is going on. Perhaps she is waiting to discuss the matter with her doctor? Has she been informed that he is coming? At the age of 92, and with a painful and immobilising condition already, she may make the decision not to go ahead with any possibly curative treatment, or indeed any treatment at all, but that should be her decision, not someone else’s, once all the options have been properly explained.
In 2001 the British Medical Journal published a report by Ajaj, Singh and Abdullah which asked ‘Should elderly patients be told they have cancer?’ They discovered that 96% of patients did want to be informed, but also that this percentage was higher than the percentage of doctors who would so inform such patients. Where does Mrs McCall’s doctor fit? All those in the study had full cognition, but some had limited mobility and so less independence. This latter group was less inclined to want to know about their illness. We are told that Mrs McCall has this kind of limited mobility.
The Relative’s Point of View
One question that must be asked is how did the daughter know the diagnosis when her mother did not? They would both have been aware of the symptoms and the subsequent hospital investigations. Does the fact that the daughter has been informed, but not the mother, reveal that a negative response to full disclosure is expected from Mrs McCall? A Spanish study of 2007 (Elderly patients also have rights, Pérez-Cárceles et al) found that only 5% of patients reported being asked if relatives could be informed. A rather higher proportion of relatives had in fact been informed. There proved to be, in Spain at least , doubt about the advisability of elderly patients participating in decision making, and the older they were the more this attitude prevailed. It was concluded that the opinion of the medical fraternity and the family play a large role despite the patient’s supposed rights to autonomy.
Relationships
The daughter will herself be an elderly woman and needs support in a difficult situation, but she too needs to be properly aware of possibilities in order that she can support her mother. In the case of a child, a guardian has the right (which can be overruled) to withhold treatment, according the NHS Patient Rights guidelines, but this daughter, although she may be next of kin, does not have that legal right. We are not told if there were other relatives or how close the relationship between mother and daughter was. These are both factors to be taken into consideration.
In research carried out in Dublin in June 2000 a range of elderly patients and their relatives were asked about their reactions to cancer. By far the majority of patients wanted to be informed, but only 55% of the relatives in the study wished their elderly relative to be informed. In 61% of cases there was agreement from both sides, which means that there were a large number of cases where there was no agreement. Without knowing what Mrs McCall’s wishes, would be it is impossible to place her among these statistics with accuracy, but it does seem likely that she and her daughter might have different views. It might be helpful if it was explained to the daughter how by far the majority of people preferred to be informed, even of very bad news. Her motives might be good, but she would not actually be helping her mother by refusing her information, especially if symptoms could at least be relieved by treatment.
Conclusion
This situation is not completely straightforward. Does the doctor know the patient well enough to be able to ascertain her wishes on the matter without revealing the diagnosis? What are his views? Has the home an agreed procedure to meet the particular circumstances? Mrs McCall has complex physical problems and so should have a care manager who is the responsible link person who will have formulated a care plan, monitored the care package and is responsible for overseeing that the package as defined is carried out. This care manager is the person who should deal with the daughter who obviously feels that she has a responsibility to her mother and wants to protect her. This does not mean that she has a legal right to order the withholding of information, especially if, as in this case, this could lead to the possibility that they will not receive the most appropriate treatment.
When someone becomes very old and is increasingly physically frail it is easy to act as if they are also frail mentally, even when it is known that this is not true. But age, even if accompanied by extreme frailty and dependence, does not mean that a person no longer has the right to be informed. The NHS Choice page ‘Choice of treatment’ (2007) states that:-
It’s important to be involved in decisions about your treatment and to be given information to help you choose the right treatment. When making treatment choices, you’ll often discuss the options with your doctor or another healthcare professional.
It goes on to tell patients that they have the right both to ask questions and to participate in decisions, including the option of accepting no treatment at all. Patients are advised to listen to the experts, but are assured that the final decision is theirs. According to NMC guide lines ‘Caring for Older People’ ( page 6 ) :-
The essence of nursing care for older people is about getting to know and value
people as individuals through effective assessment, finding out how they want
to be cared for from their perspective, and providing care which ensures that
respect, dignity and fairness are maintained.
McCall cannot be involved in any decisions unless she has the full facts to which she is entitled.
In 1859 Florence Nightingale said ‘It may seem a strange principle to enunciate as the very first requirement in a Hospital that it should do the sick no harm.’ The same principle applies to a care home. Therefore the staff must support Mrs McCall in obtaining the best possible care available. The increase in the numbers of very elderly people in the population, together with improvements in long-term survival because of advances in cancer treatment, means that situations like this will be increasingly common. The high professional standards of nurses and other medical staff have a great impact on the well being of all those in their care. This extends beyond their physical wellbeing, but also includes being listened to as well as supported and encouraged. Although only a student nurse I am part of the nursing home care team. The team as a whole has a duty to ensure that a patient’s rights are always maintained, including the right to confidentiality, the right to be informed about their care plan and included in decision making about their care.
References
AJAJ, A. SINGH, M.and ABDUALLAH, A., 17th November 2001, Should elderly patients be told they have cancer? Questionnaire survey of older people, British Medical Journal 323 1160, available from http://www.bmj.com/content/323/7322/1160.1.full ( acessed 30th September 2010)
CARE HOMES FOR OLDER PEOPLE, National Care Standards, available from http://www.infoscotland.com/nationalcarestandards/74.html ( accessed 1st October 2010)
CHOICES, NHS , 2007, How do I access my medical records (health records)?, available from http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68&subcategoryid=160, (accessed 30th September 2010)
DATA PROTECTION ACT 1998, Legislation.gov.uk, available from http://www.legislation.gov.uk/ukpga/1998/29/contents ( accessed 30th Sepotember 2010)
ELGAR,B. and HARDING , T.,2002, Should cancer patients be informed about their diagnosis and prognosis? Future doctors and lawyers differ, Journal of Medical Ethics, volume 24 ( 8) pages 258-265, available from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1733617/ ( accessed 30th September 2010)
GUIDANCE FOR THE CARE OF OLDER PEOPLE,, March 2009. Nurses and Midwives’ council, available from http://www.nmc-uk.org/Documents/Guidance/Guidance-for-the-care-of-older-people.pdf accessed 5th October 2010
LUNG CANCER TYPES, 1999, Medical Communities .com available from http://www.oncologychannel.com/lungcancer/types.shtml ( accessed 30th September 2010)
Mc ILFATRICK, S and KEENEY,S.,( 2003) Cancer Nursing Priorities: A Delphic Approach, available from http://eprints.ulster.ac.uk/15078/ ( accessed 30th September 2010)
MIYATA, H. , HISATERU,T., MIYAKU,T.,TAMI,S.,AND ICHARO,K.,(2004) Disclosure of cancer diagnosis and prognosis: a survey of the general public’s attitudes toward doctors and family holding discretionary powers, BMC Medical Ethics, available from http://www.biomedcentral.com/1472-6939/5/7 ( accessed 30th September 2010)
NHS PATIENT RIGHTS, Citizens Advice Bureau, available from http://www.adviceguide.org.uk/index/family_parent/health/nhs_patients_rights.htm#Righttorefusetreatment ( accessed 30th September 2010)
NATIONAL SERVICE FRAMEWORK FOR OLDER PEOPLE, March 2001, available from http://www.dh.gov.uk/( accessed 1st October 2010) .
NOONE I.,CROWE,M.,PILLAY,I. and O’KEEFE, ST., ( 2000) Telling the truth about cancer: views of elderly patients and their relatives, Irish medical Journal , 93.(4) pages 104-5, available from http://www.ncbi.nlm.nih.gov/pubmed/11037566 ( accessed 30th September 2010)
PĖREZ-CÁRCELES,M.,LORENZO,M.,LUNA,A.and OSUNA,E.( 2007) Elderly patients also have rights, Journal of Medical Ethics, 33 712-716 available from http://jme.bmj.com/content/33/12/712.abstract ( accessed 30th September 2010)
ROPER,N., LOGAN,W. AND TIERNEY,A. 1980, Elements of Nursing, a model for nursiong based on a model of living, Edinburgh, Churchill Livingstone.
ROYAL COLLEGE OF NURSING GUIDELINES 2006, Informed Consent in Health and Social Care Research, available from https://www.rcn.org.uk/ ( accessed 30th September 2010
SCOTLAND’S NATIONAL CARE STANDARDS, Principles, available from http://www.infoscotland.com/nationalcarestandards/CCC_FirstPage.jsp ( accessed 1st October 2010
THE PATIENT’S CHARTER, 1997-2010, Press for change, available from http://www.pfc.org.uk/ (accessed 30th September 2010)
THE REGULATION OF CARE ( SCOTLAND) ACT , 2001 available from http://www.opsi.gov.uk/legislation/scotland/acts2001/asp_20010008_en_1 ( accessed 30th September 2010)
TREATMENTS, Choice of treatments, 9 2007) NHS Choice available from http://www.nhs.uk/choiceinthenhs/treatments/pages/treatments.aspx ( accessed 30th September 2010)
YOUNG HO YUN, CHANG GEOL LEE, SI-YOUNG KIM, SANG WOOK LEE, DAE SEOG HEO, JUN SUK KIM, KEUN SEOK LEE, YOUNG SEON HONG, JUNG SUK LEE, CHANG HON YOU., The Attitudes of Cancer Patients and Their Families Toward the Disclosure of Terminal Illness, Journal of Clinical Oncology , Volume 22 number 2 pages 307-314 available from http://jco.ascopubs.org/content/22/2/307.full ( accessed 30th September 2010