We are living longer. A major achievement of medical developments and health services is the increase in human longevity. For the first time in history the oldest-old, or age 85 and over, and centenarians are emerging as the fastest growing age categories in the global population. The age 85 plus category is expected to grow at a rate of 151% from 2005-2030, while the 65 and under population is expected to increase only 21% during the same period (see National Institute on Aging: Trend 3: Rising Numbers of the Oldest Old). We are entering into the age of the mass geriatric society.
We are living deeper in the realm of old age, but what is the nature of that experience? Does it add to the quality of our life experience? The FRONTLINE: Living Old series provides some compelling insight into the authentic experience of old age culminating in the end of life. One unavoidable implication of living longer is chronic disease and increasing problems of disability. The oldest-old are one of the most vulnerable segments of the population, and how we treat them is a measure of the quality of our society and culture. The possibility of becoming an oldest-old has become a major life challenge that we will have to confront. How can we continue to live a life of meaning and purpose deep into old age while aging gradually yet relentlessly takes away our independence?
“We’re on the threshold of the first-ever mass geriatric society,” says Dr. Leon Kass, chairman of the President’s Council on Bioethics from 2002 to 2005. “The bad news is that the price that many people are going to be paying for [an] extra decade of healthy longevity is up to another decade of anything but healthy longevity. … We’ve not yet begun to face up to what this means in human terms.”
– Dr. Leon Kass in Frontline: Living Old Program
The Frontline: Living Old program is divided into six ten minute segments. Each segment is focused on a core issue related to old age. The participants in the program encapsulate the profound influence of advanced aging and include courageous contributions from elderly people in the “oldest-old” phase of life some of whom were nearing death, insights from geriatric doctors and family practitioners, as well as the children and care-givers of elderly parents sharing their experiences. During the program I was deeply moved by many of the insights and comments, and frequently found myself be reminded of the experiences I had in helping my parents during the oldest-old phase of their lives.
Part 1: Our Aging Society
The increasing age of the world’s population has become common knowledge. An excellent overview of this global trend is a United Nations publication entitled Population Ageing and Development 2012. The number of people 60 years of age and older is expected to grow from 810 million in 2012 to more than 2 billion by 2050. In other words, by 2050, one out of every five people will be age 60 or older. Of these 2 billion, approximately 400 million will be aged 80 or older, and 3.2 million will be centenarians by 2050.
In the program Dr. Leon Kass refers to this trend as the emergence of the first mass geriatric society in the history of humankind. We have extended the average length of our lives, but that period of extension is not necessarily enjoyable or perhaps even welcome. Living longer does mean that it is highly probable that we will suffer from chronic and incurable diseases of body and mind. People are now living long enough that they die from the long-term presence of a chronic disease. That is to say, living deeper into advanced age means the increasing probability enfeeblement, frailty, and vulnerability.
The probability of chronic disease unavoidably increases with age. Our health care systems are largely designed to handle acute care needs, while our ability to assist with chronic care needs is quite limited. There is a shortage of geriatric doctors to address the health care needs of an aging society. In other words, our health care system is not designed to support an aging population. This creates the possibility of a serious crisis in health care.
To resign ourselves to old age as a grim reality is, of course, not meaningful. Our view of old age should not limited to the decline of physical and mental functioning, and images of destitution and aloneness in nursing homes. Over the next thirty years, there will be more people over age 65 on the planet than ever before. If there is a certain inevitable decline of body and mind in our advanced years, how can we still embrace authenticity, creative expression, meaning, and purpose as ways of continually improving the quality of our lives?
Part 2: A Looming Crisis in Care?
The loss of independence is one of the most devastating effects of aging, and specifically old age. None of us wish to die inside a nursing home. We secretly wish to live a healthy and meaningful life as long as possible, and then die peacefully in our sleep in the comfort of our own home without becoming a burden to our loved ones. Unfortunately, for the vast majority of us, this is a fantasy. Quite frequently people live a long time into old age with serious health issues, physical pain, as well as the deep emotional distress caused by our increasing vulnerability and reliance on our friends and loved ones for support.
The loss of home is, for me, one of the most devastating possibilities of old age; it was one of the most traumatic experiences for my parents as well. The fear of losing home is the source of untold emotional trauma. However, the reality is that staying in home in our final years can become unfeasible. Family doctors are now returning to making house calls. In the case of my parents, they both received in home care through a health care unit consisting of a family doctor, nurse practitioner, personal support worker, and pharmacist. However, when twenty-four hour care becomes a requirement, the possibility of having to leave home in order to receive effective health care becomes a poignant reality.
“It has been the most difficult time in my life, because I’ve had guilt. I don’t think anyone wants their parent or a loved one to have to be in an institution.”
In this segment, it is mentioned that the annual cost of twenty-four hour in home health care is $150,000 depending upon the sophistication of care required. The children of elderly parents find themselves in the difficult situation of having to provide care and support for their aging parents, as well as their own families. There is currently no meaningful structure beyond that of family to provide significant in home care for elderly parents. Ideally, the family is the key source of support for elderly parents, however, that task is becoming increasingly more complex and unrealistic.
The period of home care can last years or even a decade. There are statistics that show that only families with three or more daughters or daughter-in-law have a 50% chance of not finishing their years in a nursing home facility. Parents do wish to be a burden to their families, but the reality is that the family unit is the single most important factor in the provision of effective elder care. As a society, we need to develop effective public policies that elevate the significance of and increasing the resources for providing in effective and compassionate in home care. Simultaneously, we need to evolve the concept of nursing homes beyond the current focus of providing basic health care to the provision of a lifestyle rich in meaning and purpose.
Part 3: The Importance of Home, Independence, Family
This part is beautifully named and brings together three of the most essential elements that exist at the very core of our humanness: home, independence, and family. These three elements form an essential ecology for the care, gratitude, and love for our elderly parents. Through the preservation of home, independence, and family, we create the foundation for living old.
There are a number of insightful comments made in this segment:
- A 99 year old woman – “I’m not afraid, I don’t want to live forever.”
- One participant in the program referred to the nursing home as “the waiting room,” or the place people go to await their own death.
- A deeply courageous statement: “I miss my friends. I miss my home. People say you can’t have everything, so I try to be happy.”
- A geriatric doctor expressing his own fears: “Giving up independence is the worst. It’s what everyone fears. It’s what I fear.”
- A positive comment on nursing homes: “A nursing home not always a downturn for people.”
I recall seeing elderly people in my parents’ nursing home that were alone. I recall be shocked to find out that even though family lived locally, they rarely visited. Sometimes the fears we harbour aging and the approach of death can paralyse our common sense and suspend our humanity. If we succumb to these fears we make crucial and irredeemable mistakes that may haunt us for the rest of our own lives. Providing meaningful help for the elderly is an act of courage in the sense that is forces us to stand in the midst of our own impermanence and embrace it for what it is.
Part 4: Parents and Children: A “Good Death”
What is a “good death?” A good death, for me, means to live actively with good health and mental acuity for as long as possible, and then to experience a short pain-free decline into death that does not place a burden on my loved ones yet offers time to say good-bye. A good death does not mean, at least for me, simply living as long as possible regardless of my quality of life. Like many people, I would prefer to experience a shorter lifespan with a good quality of life, than a longer life span in which the final years of my life are immersed in the physical and emotional pain created by the loss of independence.
“When you are young you want to live forever, when you are old you don’t want to live forever – that becomes a fear.”
Children of elderly parents are sometimes challenged with making excruciatingly difficult decisions about their parents that no child would ever want to make. Sometimes decisions have to be made that prevent a parent from returning to their home, and their sons and daughters find themselves in the unfortunate position of delivering this message to their mother or father. In the program a daughter (and nurse) states: “Nothing has prepared me for taking on the role of caring for my mother.” This is a particularly compelling insight; even trained health care practitioners are deeply challenged by the decisions and lifestyle adjustments they are required to make in order to care for an elderly parent.
Your heart wants to fix everything, even though your head says you can’t.
There is another poignant scene that shows an exchange between a husband and wife who now reside in a nursing home together. They had been married sixty years, and he now had Parkinson’s disease (the second most common neuro-degenerative disease) while she was suffering from Alzheimer’s disease (a common cause of dementia). Their journey started as a trip to the hospital, leading to a short-term stay in a nursing home for recovery, to never returning home again.
Part 5: Deciding When Enough is Enough
Death used to be a relatively swift process but now the line between life and death has been blurred. We are able to delay death, but not necessarily maintain an adequate quality of life. This creates significant challenges for families. Parents do not want to be a burden on their family. A living will, or advanced care directive, is a document that attempts to remove as much of the burden of decision-making from the family as possible. In this segment Dr. Leon Kass notes that it is impossible to describe all the scenarios in a document and most decisions cannot be adequately expressed in writing. A number of key questions emerge:
- When is the medical standard of care no longer in the best interest of the individual?
- How long should we use medical technology to intervene and delay death?
- When do medical tests become self-serving, and in fact be a cause of increased suffering?
- How can the children of elderly parents be helped to make a decision that no child ever wants to make?
- How do we get to the place we can experience acceptance in allowing a parent to die?
- How can we be fully present with a parent when medical interventions have stopped and they have entered into their final moments in this world?
Many of us have or will eventually stand witness to the death of a parent. It is a profoundly difficult to hold a parent’s hand and consciously project love and gratitude to them while they are taking their final breaths. It is immensely difficult not to become the victim of our own emotions while an elderly parent dies. When medical intervention stops hospice care begins. This means that all efforts are made to provide as much comfort as possible during the final weeks, days, hours, minutes, and eventually seconds of life. Time does indeed run out on all of us.
Part 6: The End of Life Decisions
“I tried to learn to walk, but it’s hard… So I don’t know what to look forward to. I don’t really look forward to anything. Old age is for the birds.”
When we lose our independence we can often lose our sense of purpose in life. And when this happens we no longer know what to look forward to. This is the essence of despair, which is in itself a form of suffering. There is a kind of threshold we pass through late in life, when it becomes exceedingly difficult to imagine another day.
End of life decisions is a topic that we as a society have not effectively dealt with. Should people have the option to opt out? This is a highly controversial question and a clear answer is elusive. But it is also a very human and humane question that deserves serious reflection. As William Koch states, “society has not yet started to deal with living old in human terms.”