You can get quality elder care but be prepared to pay for it. SOUMYA NAIR

  

Aged care in a care facility is no more cheap. But when you think about it you are paying for somewhere to live, your meals, laundry, electricity and a number of people to look after you around the clock. The good news is that it is actually a lot of comfort and support in the fag end of life when the aged person needs assistance with daily living. Majority starts cribbing about the cost as if they are caught unawares.

Sharon D’Souza never dreamt that elder care can be such a difficult thing. Past two years with her bed ridden mother’s long term care, she learnt a different lesson. Sharon’s mother is bed ridden and needs round the clock care. But when a care home bill tops 45000/- a month, the best-laid plans get tossed aside unless you anticipate. Like others faced with the stunning cost of elderly care, Sharon did the math and realized that her mother could easily outlive her savings, a nightmare haunting her. Experience taught her She had followed the expert advice, planning ahead in case she wound up unable to care for herself one day.

Even with her mother’s savings, 78 year old Mrs. D’Souza, a rheumatoid arthritis patient who is bed ridden past two years still had to top up with around 15000/- every month to cover her care in a care home in Pune. "An awful financial situation," said her daughter, Sharon. For the two-thirds of middle class Indians over 70, who are expected to need some long-term care, the costs are increasingly exorbitant. The cost of staying in a decent care home has climbed at twice the rate of overall inflation over the last five years, according to our experience. One year in a private room now runs a median Rs. 300000/- a year, while annual cost for home-health aides runs Rs. 250000/-.

"If you have any money, you're going to use all of that money," a frustrated Sharon said. "Just watch how fast it goes." Sharon wonders how people manage the widening gap between their savings and the high cost of caring for the elderly? In India insurance doesn't cover long-term stays, so a large swath of elderly people wind up on the personal savings and ‘beg for charity from children’.

"Within the first year most people are tapped out," said Philip Cherian, a practicing chartered accountant and the director of two retirement homes in Bangalore. "Middle-class families, though cash rich, just aren't prepared for these costs." Cherian sums up.

Everything changes when, for instance, an aging father struggling with dementia requires more help than his wife and children can manage. Remember plans that looked solid on paper are no match for their bills. Cherian says plans for care and finance are equally important to prevent unpleasant happenings and inferior care.

Many of the retirement homes in the country just provide accommodation, housekeeping, food and this will be included as basic cost. Linen, laundry, physiotherapy, medical, consumables, TV, internet, grooming, maintenance, etc., are all charged extra and considered as hidden charges. On average, a shared room in a nursing home costs anything between 20k to 40 K without care. A private room, or a studio apartment can still costs higher. All the facilities collect deposits with various modes of deductions. Deposits range anything between 2 lakhs to 60 lakhs, depending upon the facilities and the size of accommodation.

Now comes the variables of the long term care industry. "The amount of care you need dictates the price," said Swetha Banerjee, a geriatric care manager in a care home in Kolkotta, "and there aren't that many ways around it."

Hiring an aide to spend the day with an elderly parent living at home is often the cheapest option, with aides paid a minimum of 15000/- a month in some parts of the country to 35000/- in few metropolitan cities. But hiring them to work around the clock is often the most expensive, Swetha said. "Needing help to get out of bed to use the bathroom in the middle of the night or patients with peg feeding or sleep disturbances means you need at least two attenders round the clock and in that case better to choose a nursing home," she said. She also points out to other costs like physiotherapy, and consumables like diapers, gloves and masks, catheter management, and other paraphernalia associated with long-term care. Last but not at all the least, now a day, as the medicines in old age are costly. Many elders have multiple conditions necessitating the consumption of many costly drugs.  This adds up to the cost.

Sushma Kavale, another Bangalore expert in long-term care has a different take on this so-called ‘awful financial situation’. According to her, for those solidly in the middle class, however, the answer is actually not very complicated, rather a hype. ‘Anticipate cost, and be prepared to spend and expect rising trend to continue’, she asserts.

After a close look at Sharon’s mother’s financial situation, there is no grim picture as the way it made out to be. Taking Sharon’s case study, Sushma wants to dispel the myth of ‘finance crunch’ for a middle class family. They have too much money for all the luxuries  under the sun but not enough to cover the typical few years of care of their ‘beloved’ mother.

When I told Sushma about me writing an article on the financial distress faced by many families, as a veteran in long term care, Sushma too admit that it is no easy affair, unless the old man/women plans well in advance. ‘You can get quality elder care but be prepared to pay for it’. Financial distress is the result of many factors. It can be the actual crunch. But according to her, majority of middle class and above have sufficient means or income but not willing to pay up.

Older adults those are deprived of the qualitative health care at their fag end of life, citing reasons like "too expensive" "poor affordability" "siblings doesn't go dutch" are unlikely and unconvincing excuses. Most elderly parents are made poor during infirmity by draining them off their resources by the children or immediate families. Many elders have some savings, assets or some little fall back from their life long hard work and earnings. In a household when the elderly parent retire from active life, assets and savings are parted among children either by persuasion or parents willingly share. In few cases parents hold some of their assets and savings. In a phase where they are infirm and bedridden no more able to run their finances on their own children chose how much to spend or what kind of quality care to offer, sadly its Price that's preferred over Quality leaving the older parent to inferior care. Considering a middle class elderly parent in India, majority got some assets or meager savings which actually can take care of their rainy days in a most dignified and graceful manner. Yet, they elders get deprived of it because their old age care is not their choice but their children's or someone else's.     

Having money and not spending it may be a problem lots of caregivers wish their families had, but it’s a problem nonetheless. “Money is a very emotionally charged issue,” Ms. Sushma said. “It’s hard for rationality to rule.” “I can’t afford it” provides a good all-purpose excuse.

“WHAT BIG DEAL, PATIENTS GET RE-ADMITTED”, MANY ARE TOLD

Anirudh is fed up with the frequent readmissions of his mother, Jayadevi and has no qualms of showing his frustration. ‘It is a painful process and especially I am far away in Bangalore and mother lives in Bhubaneshwar. Each time I have to fly down and imagine the inconveniences causing to my mother and my plight. Doctors give vague answers’. ‘What big deal’, the attitude of doctors and hospitals irks Anirudh.

Seniors continue to be readmitted to the hospital too frequently. But when it comes to explaining why, patients and providers are on Mars and Venus. The patients and relatives blame doctors and nurses. Doctors and nurses blame patients and relatives. And everybody blames the hospitals.

The problem, everyone seems to agree, is that hospital discharges are a mess. Patients don’t understand what they need to do after they go home: They don’t see their treating doctor (primary care doctor), they don’t take their medications properly, and they land back in the hospital. Do’s and Don’t are never explained. In short, no understanding of the clinical condition, prognosis, medications and management. That revolving door jeopardizes their health and costs patients crores of rupees, and more often inflict untold miseries.

Reducing readmissions should be a national priority, unfortunately in our country, even in the NABH, this is considered as a quality indicator with no penalty provision. Soumya Nair, my colleague who takes classes to nurses on transitional care practice emphasizes on the need for appropriate protocols for discharge. ‘Older adults with multiple chronic conditions complicated by other risk factors, such as deficits in activities of daily living or social barriers, experience multiple challenges in managing their healthcare needs, especially during episodes of acute illness. Identifying effective strategies to improve care transitions and outcomes for this population is essential’, Soumya Nair, who is also a practicing gerontologist, underlines the importance of care transitions, viz discharge planning.

She continues to explain that even though the strategies seem relatively inexpensive, they require greater collaboration and communication beyond the walls of the hospital, and that while hospitals are investing resources to improve patient care, they may not be investing in all the right areas. A study by Soumya listed the top four reasons for hospitalizations.

1  patients not understanding their condition and diagnosis

2  patient mismanagement of medications, especially elderly

3  patients ignoring the importance of follow up  visits with their doctor

4  families unable to or not interested in the education for adequate supportive car

We have asked few of our known doctors and nurses who want to portray the patients, especially elders, in the dreaded term, non-compliant. From this health professional’s point of view, elders often are so anxious to leave the hospital the moment they stepped in and most of them are not honest about whether they can manage their discharge. ‘This hurrying and pressure from patients and their families is also another contributing factor. They say they understand instructions when they really don’t. They say they have caregiver help even if they are alone. Then, once they get home, they fall back on the same bad habits that got them hospitalized in the first place. And when they get sick, they go to the hospital and sometime to another hospital instead of consulting their primary care doctor’. Sums up one of the doctor we interacted who wish to stay incognito.

As we directly interact with infirm seniors, their story is completely different. Most of them dread hospitalization and considers overwhelming and terrifying. It is in the words of Byrappa uncle who is back from a two-week stay as  “an alien world.” They say doctors expect them to understand complicated instructions and make decisions while they are in pain or in the thick haze of medication. Instructions are written in jargon that may be second nature to doctors, but is incomprehensible to their patients. No one has the patience to explain or counsel.

A new diagnosis of a chronic disease can be frightening to older patients.   After the initial scare of hearing such news, they may need bit of counseling for understanding what to do. Most of the doctors assume patients who have been living with a disease for many years understand how to manage it, patients say they often do not (after all, if the disease was well-controlled, they probably wouldn’t be back in the hospital). Unlike the western nations, nurses have limited role in patient education in our country.

Another trend is that hospitals are under tremendous financial pressure to discharge patients quickly—a step that often puts more burden on discharged seniors to care for themselves. They are right. Hospitals are being pushed by insurance companies to both discharge quickly and prevent readmissions. This is a tricky situation. That’s why it is more important than ever that doctors and nurses learn to talk to patients and that hospitals vastly improve discharge programs that, too often, are the broken link in the health care chain.

Soumya recommends a solution that can help to eliminate these reasons for readmission and she says it is already at our disposal. Private nursing care is the key to effective post-hospital care. Private nursing care (Home Nursing) offers assistance with Activities of Daily Living (bathing, feeding, dressing, transferring, etc.) and can include assistance with light housekeeping, meal preparation, transportation and more. A skilled nurse oversees the care of each home care patient and can serve as an advocate to ensure the patient is meeting their recovery goals. This enables the client to focus on their recovery and eliminates anxiety over handling tasks on their own, all while drastically reducing the risk of hospital readmission. Again the immediate family who is busy earning a livelihood also relieved of the caregiving obligations.

DYING THE RIGHT WAY

I had few moments of reminiscing my long stint of encountering the process of death. This is because today I had to attend three deaths within a matter of half an hour, a sort of record. Kumar Chandran (67), Vaidyanathan (72) and Gopal Rao (81). All of them died in my care home within an hour, as if it is an auspicious time for death. I am proud that myself and my fellow gerontologist, Ms. Soumya Nair had the privilege and mandate to  see 1000’s of deaths at close quarters. This is why I want to talk about death, and more specifically, ‘Dying the right way’.

Padma Mamee wanted to be remembered as someone who didn’t give up. Harinathan Uncle said some of his favorite times were playing golf with his rotary club members. Eddie Uncle, though a chronic bachelor said he was the luckiest man in the world, as he had the company of three dogs. Narayan Mama summed it up this way: “You have a one-way ticket. Don’t waste it!” They were all nearing death. Some were old, some young.

On many occasions, they shared their biggest regrets, favorite memories and greatest loves. I wanted to know their perspective on their lives, their dreams and their deaths. The recurrent themes were not surprising. Many talked about gratitude, family, relationships. And, of course, love.

These days we're living longer and surviving more health scares, even in old age, due to the improvements in medical technology. Most of the lives I encountered had no plans in old age thereby encountering untold miseries. Most of the afflictions, hardships and agony are man made and there fore it could have been avoided if some preparation was there. Many of my long-term care patients came to the care facility by the quirk of fate, not by intent. But as the days pass by they all get used to the care and love they received at the care center.  More important, perhaps, it is the need to ensure that they live a full, healthy, happy life that's low on stress, poor nutrition, sedentary behavior and medical interventions – and high on healthy eating, physical activity and preventive care.

Our health care system prevalent in the country try ‘preserving’ the life, knowingly well that of the futility of treatment disregarding the miseries inflicted on the patient and the out-of-control health care costs. Hospitals and Doctors conceal the truth about the treatment options and the real prognosis and ultimately the futility. Relatives narrate stories how the hospitals overcharge by inflated bills and end up paying to the tunes of couple of lakhs. You have the right to know the treatment options, the right to choose and the right to deny. Are we able to exercise our rights when it comes to long-term care.  Ending on a sound note is what everyone look for in the fag end of their life. 

We, as social gerontologists, actually have a different view; a perspective that suggests drugs and medical procedures that prolong life for a short time aren't the  answer. We subscribe to the idea of a more natural death with appropriate care at the fag end, facilitating with soothing and comforting factors playing the vital role.  We are the proponents of different school of thought, approaching death in a different way which suggests that you are less likely to die in a hospital, less likely to undergo surgery at the end of your lives and less likely to be admitted to intensive care compared to the general population. Imagine someone close to you is dying of a chronic disease – or even of natural causes (old age). How much effort – and time, and money, and emotion – should you, your loved ones and your health care team exert to prolong that life?

Is the death less worthy of our attention – remember, as the longevity increases, a person does not go gently, smiling sweetly, into adieu. ‘Dying sucks. Cancer, Alzheimer’s, Parkinson’s sucks’, Soumya, my colleague says form her experience facilitating hundreds of deaths in the past. ‘Try to mitigate the misery and not to let it rule you and take over everything’.

Before preparing this article, as part of my research, I have seen some videos uploaded in the you tube, one worthy of mentioning is ‘My last Days” (Zach Sobiech) series. I am happy that such videos are spurring conversions about death and dying and we need more discussions like this in our country. Majority of  people say they hope to die at home, yet only 30 percent actually do (Few Lucky Ones), often because people, I say, ill prepared to plan until it’s too late. We spend billions of rupees on medical treatments in the last lap of our life, too often these treatments achieve nothing but leave patients too ravaged to say goodbye to the people they love. I call dying in distress. 

Our ancient philosophers and even religions have taught us to accept the fact that disease, pain, and death are inevitabilities of the human condition. Straight, honest discussions about how to grapple with the darkest of realities—the kind Zach Sobiech shares—are helpful for people who are figuring out how to cope and for people who will eventually have to—which is pretty much all of us. We need good geriatric counselors for how to talk openly with doctors, nurses, caregivers, family, and friends about the worst of the worst ways that human bodies can go wrong.

With a growing elderly population everywhere and advances in medical treatment that prolong life (often without quality) for disease sufferers, more and more of us are facing head-on confrontations with mortality even before our own time comes. As a nation, we remain bad at talking about the most difficult facts of life—how we want to go, and what we want to be done about it. Many of us, myself included, have been schooled in an emotional style that prefers to stay away from the dark, icky facts of human life. And talking about sickness and death is undeniably difficult. My experience tells that it is definitely not possible in a hospital to die peacefully, and especially in an ICU set up.

Is it possible to have a “humane and honorable” death? YES, Very Much. Provided, we accept it’s reality and initiate an honorable exit plan. 

Never Overlook Hygiene in a Care Facility

Never Overlook Hygiene in a Care Facility

Soumya Nair

The phrase “respect your elders” is ingrained in most minds. This phrase, however, has been lost its sheen over the years and a recent visit to ‘Aseervatham’ endorses it. ‘Aseervatham’ claims to be a care home for elders and it was sort of a first time experience for me of what all things can go wrong in a care home.  You cannot compare it with a pigsty as pigsty gets cleaned everyday.  It was a shock to me that children have no qualms in admitting their parents to such care homes overlooking the unhygienic conditions. The inmates, who need help to do even the most mundane of daily tasks, are often disregarded and left in unsanitary conditions for long periods of time. Who bothers? Remember, cleanliness is an attitude.

Life threatening conditions can develop when care homes do not keep up with their sanitation needs. When germs and bacteria spread, vulnerable elders can be affected in a negative way. This is especially important because these infirm elders are most likely to have medical conditions that, along with poor hygiene, can wreck havoc on their health.

It is of utmost importance that care facilities maintain  high standards of cleanliness and personal hygiene for all their residents. Poor hygiene in a care facility can often be a cause of serious health complications for the patients living there. This can be especially dangerous for patients suffering with debilitating diseases such as cancer – where even something as simple as a cold can lead to massive medical complications. Moreover, the bacteria and germs all over the place can also affect the senior citizens under care, compromising their immunity, which will exasperate their medical complication. The increasing age of elder patients further inhibits their body’s ability to counter such diseases.

Most infections prevalent among care home residents are attributed to poor hygienic conditions. Moreover, nurses and other staff members neglect providing optimal care such as changing bandages, diapers, etc. on time, which is something that can also lead to medical emergencies. Lack of hygiene and sanitation can cause them to suffer preventable diseases that could be avoided by the nursing home that practices proper hygiene. In many cases, the reason why a nursing home might not be putting the appropriate attention to hygiene is because of a lack of staff or resources to keep up with this important daily task.

The care home’s staff often fails to recognize the importance of hygiene given their lack of training and basic awareness. Many times, due to understaffing, employees may come under excess workload and may simply forget to carry out their necessary duties to ensure they provide professional care when it comes giving patients a bath, serving them food, etc. For example, not washing hands can lead to numerous problems such as infection and other types of problems that sensitive patient will not be able to bear. Training is therefore a big must when it comes to successfully running a nursing home.

Not only can care facilities disregard the patients’ needs for cleanliness and basic personal hygiene, but the care facility itself may also be lacking cleanliness. The physical environment is also an area of concern for care homes where proper hygiene is important. It is possible that toilets, showers, bathtubs, bathroom floors, and rooms are not properly sanitized. This can lead to the propagation of germs which could ultimately cause disease and infections.

The kitchen area, where food is prepared and served to care home residents, is also a place where it is vital to have the utmost cleanliness possible. The kitchen staff needs to be properly dressed for the job and take all the necessary measures to handle food hygienically. Also, the dining area needs to be sanitized, including the tables, chairs, buffet tables, floors, and every other area that is touched or handled by the residents.

Most aged care facilities have insufficient number of caring staff thereby compromising the caring standards. Lack of basic maintenance and janitors could be the cause of poor cleanliness in caring facilities. Healthy patient-nurse ratio must be maintained otherwise, the caring staff feels exhausted and they overlook hygiene. When there are many urgent situations going on at once, a nurse might forget to wash her hands between treating different patients. This is how germs can easily spread throughout the facility, affecting everybody living there.

Management has the responsibility to train staff to take proper hygiene measures to ensure the health of the residents. Care homes with the right amount of trained staff are less likely to have issues with poor hygiene. Cleanliness is of vital importance in this type of facility and cannot be overlooked. Relatives who wish to admit their parents should be observant and seek hygiene protocols of the facility and can also personally inspect the facility. In many western countries, care facilities can be liable for improper care of their patients due to lack of hygiene, which is not the case with our country.

(Soumya Nair is from Bangalore, India and is a practicing Social Gerontologist at advantAGE seniors.  She is the co-founder of this 17 year old company. She has been a social gerontologist since 2002, which was her inspiration for writing this well researched article. She loved being with her elderly patients, and she wrote this article highlighting the importance of hygiene in care facilities as she noticed the appalling conditions in few existing care homes. She insists that the ‘consumer’ of long-term care definitely deserves more personal hygiene and a clean environment.  Soumya hopes country’s long-term care needs overhauling changes so that elders would receive the best treatment that is necessary and so much deserved to elders.)