As part of a lifestyle and aging series, we’re working with renowned photographer Terry Lorant to showcase inspirational leaders in the industry. Each month, we’ll feature one or a few inspirational member(s) of the Amazing Care Network community who is using his or her voice to empower others in the collective aging experience. Read, in their own words, what the Amazing Care Network’s efforts mean to them.
This month we’re proud to feature ACN Member, Neelam Sekhri Feachem.
Q: How did you learn about Amazing Care Network?
NS: I learned about the Amazing Care Network through my friendship with Cora Tellez. Cora and I worked together over the years and have managed to stay in touch even through my international move.
In 2002, I moved to Switzerland and was hired at the World Health Organization where I helped countries at various income levels, often low and middle income, outline plans for health systems reform, universal health coverage.
My husband and I moved back to California in 2007 and I decided to take a position with an emerging biopharma company, responsible for access to medicines for the developing world. The firm had a natural anti-diarrheal, that was very useful for those with chronic diarrhea, like HIV/AIDS patients. It was also an important product for children in the developing world, where diarrhea is a large killer of children under 5. At the same time, I started teaching on global health systems at the University of California San Francisco (UCSF). I became a faculty member at UCSF teaching a graduate level course in global comparative health systems and health financing a few years ago. My research currently focuses on universal health coverage, which for the US (the only wealthy country that has not achieved universal health coverage) means how do we get value for money. For low and middle income countries, it focuses on getting basic access to quality care, and how to deal with the financial hardship of accessing health care and poor health that lack of access causes. Last year I started teaching in the graduate program in Berkeley as well.
Q: How did you become involved with the Amazing Care Network?
NS: It was a few years ago when Cora introduced me to some of her other amazing friends, that she had the idea about creating the Amazing Care Network. From a global perspective, I can see the impact of aging populations on healthcare systems everywhere. This is a big, big issue. And it’s a big issue not only in wealthy countries- for example, we often hear about the high ratio of the elderly to those who have to support the elderly in Japan. But we are also seeing this demographic shift and the economic and personal impact in middle-income countries, such as China, and low-income countries as well. Birth rates have been going down steadily over the last 2-3 decades and most countries are now at zero population growth. So, who takes care of the elderly who are living a lot longer? And of course many have chronic illnesses, just because they’re living a lot longer. In some cultures, like my country, India, traditionally extended families have taken care of their elderly. But this is changing as well. With smaller families and with a modern family structure, that’s not as realistic for young couples any longer.
Cora recognized that the issue of being caregivers to their husbands and eventually growing old without husbands, was an issue that was particularly acute for women. I have seen this with friends as well, so I was enthusiastic about the concept and became one of the initial investors and partners of the company.
My parents died when I was quite young so I don’t have elderly parents to take care of but one of my closest friends got involved with Amazing Care Network early on because of her many responsibilities taking care of her aging parents, and also a husband who is quite a bit her senior.
I didn’t think that I would personally have an opportunity to use Amazing Care when I signed up, but as it turns out because I have several friends without children, I have become the executor for some of my friends for both their wills and advanced care directives.
Q: The scope of caregiving has changed, hasn’t it?
NS: It has changed! The demographics of marriage have changed as well as the demographics of having children. One of these friends has recently been suffering from a difficult mental illness- all very unexpected, completely out of the blue. It’s been really heart breaking. She’s unable to function independently now and I have relied on Amazing Care Network to identify resources and get advice on how to support her. I was asked to make arrangements to help her navigate the health care system because of course, I know how the health care system works and also know how insurance works, to help her get the care support she really needs.
Q: How did the Amazing Care Network help you support your friend?
NS: Fortunately for me, I am in the right field and it is helpful to have a doctor in the family (my sister’s a doctor), and a lawyer for a friend.
I called on the Amazing Care Network immediately for my friend and asked, “who does Amazing Care have in their pipeline to help with these issues? Who do they know? What can we do? “ For example, I was concerned about some of the drugs that my friend was prescribed and wanted to access strong pharmacological knowledge. Amazing Care works with the Pharmacy School at the University of California in San Diego. Amazing Care helped in accessing various resources such as how do you get access to medical records when a person hasn’t been declared incompetent? What are the kinds of resources that are available if one has to be put into a facility; what kinds of facilities are available for immediate, short-term or longer-term care? Are there patient case managers who can manage care at home for somebody who doesn’t have a medical disability but has a mental disability?
There were so many questions and so many issues; these are very complicated cases especially when it’s not a spouse or blood relative, and you don’t have a formal legal relationship other than the executor of the will or advanced care directive.
Q: Did being on the caregiver (patient) side give you a different perspective? When you’re on the patient side, what a different experience!
NS: Oh my gosh! Aside from this case, I am grateful that Amazing Care made me think about these types of issues. All of a sudden I knew that I can go to a place that has resources to help us navigate all of this. The other thing that it’s done for me and my husband personally, is that we participated in an end-of-life training exercise and we have been getting our papers together and talking about these existential issues. I’ve been coaching people as well and saying – you know, having an advanced care directive is not enough; having a will is not enough. You really have to talk through the different kinds of issues that are going to come up. Sometimes it gets a bit gruesome. All of the “what ifs?” Do you want your “Extraordinary Measures”? Well, what’s an extraordinary measure to you may not be for me.
I had to deal with this with my father before Amazing Care. My father had a stroke and did well for years. He lived in Denver and the day we went to visit him; he had another stroke. He seemed to be waiting for us to come before he died. We rushed him to the hospital and nobody had read his advanced care directive. My step mother had it with her and it said that he would want treatment if it was available. That’s okay; many people do. My sister, the physician was with me, and she knew that he would be in a vegetative state if we put him on a ventilator, so she was very concerned that we not put him on a ventilator. But his advanced care directive said he wants to be put on a ventilator.
Q: So how did you resolve that?
NS: Well, I said we have to do what he’s asking us to do and she said well, I’m going to tell you because as a physician I do this all the time, that once you put somebody on a ventilator, it’s almost impossible to get them off the ventilator. We did put him on the ventilator because this is what he wanted. We left him at the hospital, and were called back a few hours later by the doctor who basically said that he was brain dead and recommended disconnecting the ventilator. Fortunately for us the doctors made that decision. But you don’t realize how complex these things can get until you’re in that situation.
We were lucky that the doctors were honest and direct with us; I think because my sister is a physician. I’ve seen this more often than not, that doctors are not comfortable telling the family that they need to switch off life support; in other cases, some people in the family want to do this and others don’t. It’s really painful.
I think one of the things that Amazing Care does very well is help you to think of these issues when you’re healthy. I think that’s huge – to be able to think through those decisions when you’re healthy, discuss your decisions with your friends and family, and know that you have resources available to you when you’re confronted with a situation and are emotionally involved, so you may not be thinking clearly.
Q: It feels like we’re seeing, because of some of the things you’ve mentioned, people who are dealing with serious depression and mental illnesses.
NS: Yes! And mental illness is much more difficult to deal with, and it has the highest disease burden in the world. What you don’t realize is, of course, is that everybody talks about dementia as you get older, but they don’t talk about depression and anxiety as you get older and what this means for you and your friends.
I think this would be a good area for Amazing Care to focus on – how do we support mental health issues in our society and realize that’s another medical condition that changes as we get older?
Q: Do some people feel that those suffering from mental illness can just snap out of it? Or can be easily fixed?
NS: Exactly! What pill can you take to make this go away and make it better? And there aren’t any. We as lay people, don’t know enough about mental health issues and what’s happening in mental health these days. We need people who can help to educate us, because these are really severe issues. And yet what they’re learning in neuroscience and neurology is pretty amazing. But I don’t think the connection has been made yet between the psychotherapist or psychologist, and the psychiatrist, and the neurologist except in places such as UCSF where they’re actually working on research teams together, to understand the tools that are available because of the great advances in neurobiology and brain research. It’s still very fragmented and many psychologists are still working on Freudian models from the early 1900s; 30 years of psychoanalysis is probably not a good intervention when you are 70 some years old and suffering from clinical depression.
We don’t know nearly enough about this field, but I think it’s an area where Amazing Care can certainly help.