In 2017 I published a book called The Comfort of People (2017 Cambridge:Polity Press), based on research amongst people who had received a terminal diagnosis and were being looked after by a hospice. In that book I made various recommendation for how the hospice might employ new media. More recently I was approached by a group who have been commissioned by the journal The Lancet to develop a special issue around the topic ‘The Value of Dying’. My contribution is called Dying with Smartphones. Much of the time since writing The Comfort of People has been spent in the ASSA project, so this more recent contribution reflects what I have subsequently learnt. The topic is significant, since given the rapid expansion in the usage of smartphones by older people, we might expect that in the future most people will ‘die with smartphones’.

One of the reasons new media matters to the hospice is that most people want to die in their own homes, or at least stay there as long as possible, so most hospice work involved going to, or communicating with, people at home rather than them coming to the hospice. A key finding in our current project, the Anthropology of Smartphones and Smart Ageing, is the appreciation of how much the smartphone has become what we can call ‘the Transportal Home’. On the one hand, it has become a place people live within rather than just a device they use, where they compose their thoughts and entertain themselves. On the other hand, it has huge potential in relation to loneliness and isolation since it is the portal through which we communicate with other people; very different from just watching television. So, the smartphone ‘home’ can be quite convivial. The ASSA project also reinforced the our theory of ‘polymedia’, which posits that different people feel comfortable with different forms of communication and the hospice should not assume which media suits which person. One patient might prefer WhatsApp, another might prefer communicating via webcam, and a third might prefer voice calls. Many people now first want a text that confirms if this is a good time to speak. So the sensitivity of the hospice can be expressed by following patient preferences with regard to how they communicate with people now living within this Transportal Home.

The ASSA project has also seen a huge expansion in something that was just starting during the hospice research, which is the creation of WhatsApp groups by relatives to support the patient. The team members in Brazil and Chile have observed how WhatsApp can be used by medical staff to manage patient requests and other purposes. In general, our project’s conclusion, which focuses on the free and ubiquitous apps that most people already use, rather than bespoke mHealth apps, also applies to palliative care. Each fieldsite offers additional insights. For participants in Kampala, one of the primary uses of smartphones and mobile phones is to send mobile money. These remittances would often be sent to support relatives’ health needs, such as transportation to the hospital and medical fees. Smartphones can also be helpful for people with limited literacy because of the capacity to send visual communication such as photographs.

A major facility of online communications is the space to discuss difficult and embarrassing topics. For example, in China there is widespread taboo against talking about dying. For many, social media has become the first space where people experience the possibility of talking to strangers on this subject. Working with hospice patients in the UK, I found that we need two kinds of forums. One is for those who want to discuss delicate issues around chemotherapy, but only with people who cannot know who they are. Then we need another for patients who only wish to discuss these intimate matters with people they can actually see or know.

Although the ASSA project is not based on studying people with a terminal condition, I very much hope that in the future it will provide useful pointers to the way we can improve our support for people who increasingly will be dying with smartphones.

 

Three weeks ago, The Economist published an article[i] addressing all the symptoms menopausal women face, often unnecessarily. The article talks about some of the arguments in favour of the hormone replacement therapy (‘HRT’ hereafter), highlighting that misinformation about the treatment can often lead to its demonisation. In the author’s words, HRT constitutes a “cheap, alternative” treatment with significant “long-term benefits” for women entering menopause.

The article also discusses the two publications that are responsible for various turning points in terms of the reputation of HRT in the past decades. The first book to discuss the symptoms caused by the deficiency of oestrogen and as well as its potential use in alleviating these symptoms was “Feminine Forever” by Robert Wilson, published in 1966. The second turning point was the publication of the study known as the Women’s Health Initiative (WHI hereafter), published in 2002. This publication was the first to seriously emphasise the harms caused by HRT and has had a long-term effect on the reputation of the treatment, associating it with an increased risk of breast cancer. According to a 2006 BMS (British Menopause Society) article, after the WHI study came out, ‘most women’ stopped having HRT. The most recent turning point in terms of the perception of HRT is the launch of the book “Oestrogen Matters” (2018). The book’s co-author Avrum Bluming (an oncologist) reframes the findings of the original WHI study, arguing that the women recruited for it were already unhealthy or well beyond the ideal age for starting HRT. This publication, along with other recent findings, may be the key to redeeming the previously controversial treatment after all. This is great news for those entering menopause now or in the near future, but what about those to the women who went through it in the last 20 years?

The WHI study has undoubtedly had a long-lasting effect on the reputation of HRT all over the globe. This includes Brazil, where I conducted a 16-month ethnography with older people, among them women aged 50 to 72. When the findings of the WHI study were published back in 2002, the Brazilian journal Folha de São Paulo[ii] published an article where the Brazilian Ministry of Health proudly informed its readership that the Brazilian public health system (called ‘SUS’) was aware of the risks involved in recommending HRT, only having done it for very specific situations or cases (such as when women were suffering from osteoporosis) since 1995. At the time, the Women’s Health Coordinator in the Brazilian Ministry of Health was quoted as saying: “The risks are bigger than the benefits. Any serious person would recommend the therapy with precaution”. It is interesting to note that in Brazil, menopause as an issue had been included on the public health agenda since 1993, as part of Brazil’s Women’s Integral Health Assistance Programme (PAISM)[iii]. This marked a shift in the overall approach to women’s health, from an emphasis that was previously focused on maternity, to a more holistic approach that took into consideration all stages of a woman’s life and health. This can be seen a consequence of the ageing of the population in the country.

Nowadays, the official guidance published by the Brazilian Ministry of Health, summarised in a document called the ‘Handbook of Care for Women in Menopause’[iv], recommends a mix of physical and educational activities as well as eating a special diet as the main approach to managing the menopause. The material also contains healthcare professional facing information, addressing therapies including hormonal treatment (followed by a discussion of its side effects), acupuncture, phytotherapy (a type of herbal medicine) and anthroposophic medicine (a distinct special therapy system that has recognition in some countries).

The Ministry of Health issued handbook also encourages women to be informed about the risks of HRT so they can make a decision about the type of therapy they want to have. From the perspective of the research participants in my field site (a middle-class neighbourhood in São Paulo), I can say that this is very much a secondary problem. This is because there is first of all a lack of reliable information and support about menopause in the first place, and about what its effects on a woman’s quality of life may be. A quarter of the women I interviewed had gone through it with no information or support, and confessed they didn’t have much time to pay attention to the changes in their bodies because they were focused on work or family. At the time (10 to 20 years ago), many of them were taking care of their children and older parents. Moreover, menopause is a taboo even among women. Some women I spoke to are from a generation that didn’t talk about menstruation or menopause with their mothers or with their cousins or friends. They were alone. Some of them only realised during the interview that the time they stopped having their menstruation actually coincided with the time they started to experience depression, insomnia, weight gain, and a loss of libido. Decades later, I can see that the new generation of menopausal women have started talking more about the subject, but the level of professional support hasn’t improved very significantly, especially for those who rely entirely on the public health system. Take Maria’s case: aged 52, she has been having hot flushes for a whole year, but she can’t say if she is experiencing menopause or not, because she has got her period twice during this time and her doctor says her diagnosis is unclear. Without professional support to guide her at this time, she has started drinking blackberry tea, while she trying to manage the embarrassment and discomfort she faces when the hot flushes come in public. The tea was recommended by her friends, who are her primary source of information. Maria asks them for advice, but each one tends to suggest different things, since they experience menopause in different ways with distinct symptoms.

Menopause is also a class issue in Brazil. The meaning attributed to menopause and the treatments available differ from one social class to the other.  A study conducted in a low-income and religious community in the Northeastern region of the country[v] showed that in the community in question, menopause can be seen as an act of God, with God being the one helping them accept it with resilience. In that specific example, women are subjected to a set of stigmas related to loss of fertility, leading to situations where some are seen as ‘dry women’ or even ‘non women’, primarily from the perspective of men. In a peripheric urban area of Sao Paulo, another study[vi] shows women experiencing menopause as a totally unexpected event, almost as if it is something one has ‘caught’, and is not directly associated with ageing. These women tend to use basic public health clinics to manage their physical symptoms without having access to a specific programme or assistance for menopausal women. In their case, HRT is rarely recommended because of its cost and because there is a gap in local resources that means clinics are not able to manage patients in a more long-term way – HRT would involve having routine medical tests, for example. Another study conducted in an upper middle-class neighbourhood in Rio de Janeiro[vii] shows that here, the situation couldn’t be more different: menopause is swiftly ‘treated’ with HRT almost by default, because these women are in the prime of their lives and want to get on with things. This doesn’t mean this group of women considers menopause something problematic or unnatural. They just want their bodies to have the ability to carry them through the new experiences and projects they aspire to do during this period of their lives – and they can afford to pay for it.

A moral dilemma

When access to information and the cost of treatment are not an issue, having HRT still seems to raise a moral dilemma that goes beyond the choice between hormones or cancer. Having HRT can be seen as an act of vanity or an irresponsible decision on the part of women who simply can’t accept the fact they have aged, with HRT symbolising the selfish and dangerous choice to pursue youth. The moralising dimension to the consequences of that choice can be seen in the following paragraph, taken from another official document published by the Brazilian Ministry of Health, the ‘National Policy for Integral Attention to Women’s Health’[viii]:

The medicalisation of women’s bodies, with the use of hormones during menopause, finds a fertile field in the female imagination due to the false expectations it places, such as eternal youth and beauty. Medicalising women’s bodies, in the name of science and supposed well-being, has always been a practice of medicine, which will only change when women are aware of their rights, of preventive and therapeutic possibilities and of the implications of different medical practices over their bodies. Oestrogen abuse for menopausal symptoms causes serious health problems, and women should be properly informed so that they can decide whether or not to do hormone replacement therapy.

In my field site, the moralising discourse around HRT is expressed even among women who do decide to have the treatment. Even as they describe the way in which they suffer from menopausal symptoms and how HRT provides them with a better quality of life, there is still an attempt to justify their choice using expressions like “I only used the bare minimum”, “I only had it for a bit”, or “I wish I had prepared for menopause better with more natural alternatives”, quickly adding that they are either trying to quit HRT or have already done so.  Claudia, aged 65, is one of them. She is convinced that women don’t have to go through all the suffering menopause can bring, and that HRT is an important ally in supressing symptoms, but she too feels the need to emphasise that she doesn’t take it anymore, even if later in the interview she says she is still under treatment.

In the same National Policy for Integral Attention to Women’s Health, menopause is addressed as a challenging experience for women, who are now having to deal with the loss of their ability to have children as well as the end of their youth. Combined, these factors would be enough to trigger a crisis in some women, as highlighted in the paragraph below:

 “There is a systematic discrimination in our society based on people’s chronological age. In the case of women, this discrimination is most evident and occurs not only in relation to the physical body – fuelled by the overvaluation of motherhood in relation to other capacities and the myth of eternal youth – as in other aspects of life. In a patriarchal society where youth and beauty are related to success, entering “middle age” can give many women the impression that “it is all over”.”

I have had the opportunity to listen to the stories of seven women over 50 who don’t have children. Three of them had experienced fertility problems (either them or their husbands) although the couple decided to keep having sex without any intervention. The fourth woman I spoke to was married, but the couple decided not to have a child. The other three women were single. Two of them said they didn’t have a partner they could feel committed to and could start a family with and the third just can’t imagine herself being a mother. All of these women are now thinking about the children they didn’t have, but that is just because, like any other person at this stage in their lives, they have begun to think about who is going to take care of them when they get older. There is no evidence among these women or among my own female research participants that they are experiencing the feeling that “it is all over”. On the contrary, they are living their lives to their fullest and many of them are discovering new passions and engaging with new projects. While it is true that they complained about their bodies, this is not because they miss their beauty or their youth – in fact, they usually complain about the disposition they used to have (and for some, this includes the disposition for sex).

When sex matters

Menopause isn’t only about the end of motherhood or the loss of beauty. For some women, sex is huge part of their identity, although that is not true of the majority of the cases in my field site. Most women I spoke to recognised the changes in libido that they experienced after menopause and accepted them. In some cases however, the loss of libido can represent a sort of loss of the self. That was the case with Carla, aged 70, who had HRT for five years before her doctor decided it was time to stop the treatment, leading to her spiraling into depression, noticing changes in her hair and skin and also in her libido. Carla defines herself as a person that is extremely connected to sex.

“Do you know a person who is good in bed? That is who I am, and I am not talking about sleeping. I know what pleases me, I know how to please my partner, and I know how to make him please me”, she says.

As an example of an upper middle-class participant, Carla challenged her doctor’s authority. She researched alternative doctors and found one who she knew was in favour of recommending HRT. She then pursued all the necessary tests in order to be prescribed the treatment again, and found that this enabled her to go back to who she was.

“I am not just a statistic. I have the necessary tests every three months, and I have decided to take the risks”.

Another participant, Gisele (aged 61) like Carla really enjoyed sex, but her journey took her in the opposite direction. Her doctor didn’t recommend that she have HRT, given her family history of breast cancer and because she was a former smoker. “If there is even a 0.5% chance of getting breast cancer, I won’t take the risk”, she says. Since then, and despite 11 years of hot flushes, Gisele has tried to reinvent herself:

“I am glad I enjoyed sex so much, I am glad that I never held back. It was good because at least I have something to remember today. That person – me –  I really existed. Because it’s so hard today without any libido, zero. Where did all that desire go? Did I really live all that? Was it me? It was me, right? It’s very hard to recognise myself. So I’m in much need of psychotherapy, because it’s all so strange to me. How can I start to think about myself without sex?”

The original Economist article sums up the harm that can be caused to women’s bodies very well, noting that menopause can harm “brains, hearts and immune systems. It is associated with a higher risk of osteoporosis and fragility fractures, increased abdominal fat, and a heightened risk of contracting diabetes”. It is here that I would like to highlight the ways in which menopause can also harm women’s self, going well beyond the issues of motherhood, beauty, youth or diseases. In some cases, having or keeping a disposition for sex really matters to women, an aspect that I thought was missing in the original article. As the author says, “the symptoms of menopause can include hot flushes, depression, aches and pains, insomnia, anxiety and transient memory loss”. Indeed, but what about the loss of libido? In the study conducted in a peripheric urban area of Sao Paulo I mentioned before, women don’t think something like the loss of libido justifies the time and effort they would have to invest in scheduling a medical consultation and the researchers argue that even if they do so, they wouldn’t find a professional willing to listen to their sexual complaints. Even among my informants, women face the loss of libido with resilience, as if it was something they would expect at this age, or as if it was something they are not supposed to resist. Beyond the benefits for the symptoms of menopause and related chronic diseases, maybe that is something HRT could also challenge: the lack of attention paid to desire and sex in latter years of life. Not because women ‘need’ it, but because some of them want it.

 

 

 

[i] The Economist (2019, December 12). Managing Menopause: Million of women are missing out on hormone replacement therapy. https://www.economist.com/international/2019/12/12/millions-of-women-are-missing-out-on-hormone-replacement-therapy

[ii] Brasília Branch Office. (2002, July 12). F. de São Paulo.

https://www1.folha.uol.com.br/fsp/cotidian/ff1207200215.htm

[iii] Lopes, Cristina Garcia (2007). Integralidade na Saúde da Mulher – A questão do Climatério. Fiocruz. Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro.

[iv] Handbook on Care of Woman in Menopause
Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Manual de Atenção à Mulher no Climatério/Menopausa / Ministério da Saúde, Secretaria de Atenção à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília : Editora do Ministério da Saúde, 2008. http://bvsms.saude.gov.br/bvs/publicacoes/manual_atencao_mulher_climaterio.pdf

[v] Costa, Gabriela Maria C, Gualda, Dulce Maria Rosa. 2008. Menopause Knowledge And Experience For A Group Of Women. Rev Esc Enferm USP, 42(1), 81-9.

[vi] Trench, Belkis, & Rosa, Tereza Etsuko da Costa. (2008). Menopausa, hormônios, envelhecimento: discursos de mulheres que vivem em um bairro na periferia da cidade de São Paulo, estado de São Paulo, Brasil. Revista Brasileira de Saúde Materno Infantil, 8(2), 207-216. https://dx.doi.org/10.1590/S1519-38292008000200008

[vii] Pereira, Cláudia; Penalva, Germano. 2012. “Mulher-madonna” e outras mulheres: um estudo antropológico sobre a juventude aos 50 anos. IN: Corpo, Envelhecimento e Felicidade. Org. Mirian Goldenber. Rio de Janeiro: Civilização Brasileira.

[viii] National Policy for Integral Attention to Women’s Health
MS (Ministério da Saúde/ Secretaria de Atenção à Saúde/ Departamento de Ações Programáticas Estratégicas), 2004. Política Nacional de Atenção Integral à Saúde da Mulher – Princípios e Diretrizes. Brasília: Ministério da Saúde.
http://bvsms.saude.gov.br/bvs/publicacoes/politica_nac_atencao_mulher.pdf