“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.