Palliative Home Care:
The Impact on seniors, Family Caregivers and Community Health Care
 
 
Introduction:-
Caring for a terminally ill person at home can be both challenging as well as rewarding for the many caregivers who make a home death possible.
Experts have defined palliative home care as the "active care of patients whose disease is not responsive to curative treatment." This definition affirms that dying is a 'normal' process and as such, health care providers should integrate the various psychological and spiritual aspects of patient care as a means to support terminal patients who need relief from pain. Delivery of palliative care usually begins when the terminal diagnosis is made. Conservatively, palliative care begins at a 3 to 6 month life expectancy; however, service delivery varies according to the patient’s needs and condition.

Dying at home has been the preferred model for health care delivery among patients all over the world. The movement of palliative care to the home has been attributed by a number of inter-related concepts, beyond the cost savings critiques which argue that home care is a cheaper form for delivering health care as compared to institutional care. The most vocal advocates of palliative home care are home health care providers and care recipients who argue that the traditional management of terminal illness in the hospital which focuses on curative treatments rather than providing adequate care to the patient continues to dominate health care practices today.

Palliative Home Care and seniors

Research findings suggest that terminally ill patients, especially those aged over 65, are preferring the care that is being offered through home care programs as compared to the life sustaining techniques received in the hospital. Nevertheless, these studies conclude that disproportionately fewer elderly patients are able to remain in their home and receive the various home support services despite their preferences.

Palliative home care offers a number of added psychological benefits to the terminal patient as the physical home environment enhance the patient's independence, and quality of life, as the home is a place of familiarity and comfort

Although a growing number of older adults prefer to die at home, caring for a terminal client at home may become a great challenge for their caregivers. Research demonstrates that home deaths are largely dependent upon the characteristics of the patient and his/her family. For example, research studies have found that those who are more likely to experience a home death have a higher socioeconomic status as they have greater resources available needed to purchase the home supports and services that may become required if the terminal patient is needing 24 hour care.

Home deaths also become impossible for those who are living alone, do not have a primary family caregiver who is healthy and willing to provide the care needed and in addition, those who have not ac Unlike other services offered through home care programs, palliative care services integrate the patient and their family as the unit of care. The family of the terminal patient has been given a proper role in the dying triad of palliative care.

Traditionally, this triad consisted of the physician, the terminal client and the family. I argue that today, with the inclusion of palliative care services delivered at home, this triad includes the client, their family and all home care service providers including the physician. The explicit aim of palliative care is to provide bereavement services for the family of the terminal patient. Bereavement services provide the essential support through counselling to grieving family caregivers. Recognizing and respecting the essential care that is provided by family members is a significant development in long term care services delivery as there is a tendency in community care to undervalue the support that is provided by family caregivers. In fact, there is a tendency among home care providers to view informal carers as mere extensions of the terminal patient rather than as clients in their own right who need to be cared for. cepted that their illness is terminal.

Objective

Presently, there is no national or provincial social policy governing palliative home care; rather, the overall policy strategy is to integrate palliative care as an essential service of the existing home care programs in the provinces and territories. Palliative care thus becomes a part of the continuum of care offered by provincial home care programs.

Once palliative care begins, the terminal client receives service delivery from an interdisciplinary team consisting of physicians, nurses, health care aides, volunteers, social workers and pastoral care, who all work together towards the goal of providing the physical, psychological and spiritual support needed in order to relieve any pain and suffering that may be experienced by the client at home.

Considering the Cancer treatment scenario in our country there is only two options left Prevention and Palliation to be done by the NGOs/other organizations that are really serious about cancer control programme in our region. This is also applicable in case of other diseases as the basic health care system in our region cannot provide minimum requirements of the people who cannot afford to opt for treatment in an expensive treatment centers as the Government Hospitals and treatment centers do not/cannot cater their need.

Early detection of the disease is a key factor in substantially reducing the mortality rate. Every individual should be on the alert about the signals/symptoms that require immediate medical advice to facilitate early detection and diagnosis.

80% of the cancer patients in India report to any cancer treatment center when the disease reaches stage III or stage IV and the doctors have no option but to suggest for palliative care (Pain Management) only. Every year 10,000 new patients register themselves at Chittaranjan National Cancer Hospital (RCC) but the hospital has only 500 beds to cater the new and the old patients. It has been observed that number of patients referred by different District Hospitals and from the nearby districts and even from the other city hospitals go back without any treatment and are asked to report after a certain period of time to try their luck. Most of these patients do not report back and ultimately reach the terminal stage of the disease becoming a burden for the family both financially and physically.

Kolkata or any nearby place has no Palliative Care Center for these dying patients and only option for us to help them ‘To Die With Dignity’, by providing Home Care Service. There are number of patients who can afford to stay in a costly Nursing Home/Hospital but most of these establishments do not accept such patients as there is no focused treatment for these patients other than nursing care.

Considering all these factors the Concept of Home Care may be considered which is not that difficult to provide from SASK set up. If the manpower and the equipment can be mobilized then this noble service can always be provided.

The pain of Roshanara
By Benita Sen

Cancer patient Roshanara’s morphine tablets keep her relatively pain-free. Morphine is part of palliative care, which allows terminally ill patients to live a life of dignity, free of pain. Why, then, is it so scarce in India?

All we have is an address from the hospital records. As we scour the bylanes of the approximate locality in Lucknow, that proves insufficient. Up and down the lanes we wind looking for the home of a fruit seller. And then, just when we are about to give up the search, one young man remembers a woman in pain. He leads us to the door of Roshanara.
The door opens. A woman sits up in bed. “Doctor saab! It’s you!” she exclaims, her pain almost forgotten for a moment. “I heard your voice outside and couldn’t believe it was you,” she says as Doctor Shakeel, in charge of the palliative care unit of the King George Medical University Hospital, checks the swelling on her foot.
The pain in the blue-green painted room is palpable. Not just the physical pain of Roshanara, but the pain of her two daughters who see her suffer and wait to give her the next dose of the white pill that will relieve some of the suffering.
Roshanara has spreading bilateral breast cancer. She was first diagnosed with cancer about 14 years ago and responded to treatment. But she had a relapse recently and this time, the pain has been so bad, it has kept her bedridden.
She doesn’t know what the white pills by her bedside are, but she does know that these tablets have brought her immense relief. “That’s morphine,” Dr Shakeel says. Roshanara takes one every 12 hours. “Before they started me on these tablets, I would shriek in pain,” she recalls. “Her cries could be heard down the gully,” remembers her daughter.

Morphine use in India

Morphine looks innocuous. But the issues behind it are not. Roshanara does not understand the chemistry of morphine, an opiate analgesic extracted from dried poppy pods and stems, first isolated in Germany in 1804. Its extraction and purification was patented by Hungarian chemist Janos Kabay. As a pain killer, morphine does not cause any alarming side effects nor is it addictive, a fact that many doctors do not know, say activists working in palliative care. “There is the fear of misuse and the morphine falling into wrong hands (read, the drug mafia) but for that, policing needs to be stringent,” points out one activist.

The World Heath Organisation Collaborating Center for Policy and Communications in Cancer Care notes that approximately one million people experience cancer pain in India, every year. ‘Unrelieved pain not only affects the patient, but also the family and the community,’ it says. It also accepts that ‘morphine is an essential drug for cancer pain management’, as a safe and effective treatment for severe pain. Ironically, the study notes that ‘India supplies much of the opium to make morphine for increasing use in the rest of the world, but it produces very little for domestic use due to lack of demand.’

Demand from the powers that be, perhaps, not the end-user writhing in pain. India gets barely six per cent of the world’s legal morphine. Palliative care is needed not just by cancer patients but by those with several other chronic illnesses including AIDS. Morphine is also given to patients recovering from heart surgery. That translates to over two million patients suffering avoidable pain when the answer can be the cheap, effective morphine. The United States’ 2007 International Narcotics Control Strategy believes 20-30 per cent of India’s opium crop is diverted to the grey market.
The Narcotic and Psychotropic Substances Act of 1985 raised the stringency bar. Anyone found misusing morphine could be put behind bars. Every Indian state has its own version of the Act. As a result, between 1985 and 1997, there was a 97 per cent fall in the use of morphine. From 573 kg, it plummeted to 18 kg.
“Two or three generations of doctors have not used morphine,” points out Poonam Bagai, a cancer survivor, founder of CanKids…Kids Can, and the vice chairman of Pallium India.

What of the side-effects?

In a presentation during a recent workshop on ‘Addressing pain and palliative care through improved cancer pain policy’, in Lucknow, Dr Sushma Bhatnagar of Dr B R Ambedkar Institute-Rotary Cancer Hospital (IRCH) Delhi, made the point that “allergy and intolerance are rare”. The landmark Boston Collaborative Drug Surveillance Project, 1980 (by J Porter and H Jick) found that of about 11,882 patients who received opiods, only four became addicted and ‘only one of these cases seemed significant’. The report notes: ‘A patient’s need for escalating dose of a narcotic, due to a cancer or other chronic illness, is most often due to progression of the disease rather than addiction. Patients with stable disease can be maintained on the same dose for extremely long periods of time.’

Why suffer needless pain?

At a very basic level, palliative care addresses any pain. “Not many doctors, nurses, paramedics and other professionals involved in health care understand that,” says cancer activist Samiran Das of the Saktipada Das Memorial Foundation who is trying to offer pain relief as part of palliative care at a clinic in the Sunderbans, West Bengal.

The availability of pain killers for a routine headache or a gripe in the stomach could be taken as the rock bottom of the palliative care ladder. This perspective also helps one empathise with the need for pain relief – as an important part of palliative care -- for people with serious, life-threatening diseases.

Although the first National Cancer Control Programme (NCCP) was initiated in 1975, it was only in 1984 that it recognised pain relief as a basic service. The modern medical concept of palliative care was introduced in India only in the mid-1980s. While the government has had a role to play, a good amount of the infrastructure and care that is in place is due to the efforts of individuals, NGOs and international players, including the World Health Organisation.

In the 1970s, the medical community had to think beyond aspirin. Patients in excruciating pain were given pure opium dissolved in tea. This was effective but impractical, since the opium had to be collected frequently from the authorities. Oral morphine entered the scene around 1986. The first pain clinics opened in the Regional Cancer Centre, Trivandrum, and at Kidwai Memorial Institute of Oncology, Bangalore, and they dispensed oral morphine free of charge for the first time. The first hospice, Shanti Avedna, started in Mumbai in 1986.

Today, morphine is available for pain relief, but the process is cumbersome and time consuming. Even a hospital running a palliative care centre needs to take licences from about five departments. As K M Mishra of the Cancer Aid Society found when he tried to get 300 tablets for Sanjay Gandhi PGI, this can mean that by the time the morphine arrives, the permit has expired. Dr L Jaichand Singh, a professor at Imphal’s Regional Institute of Medical Sciences (RIMS) faced something similar when he ordered 10,000 morphine tablets that should have helped cancer patients be free of pain for about six months. By the time the licences were through, the company ran out of stock.

For patients like Roshanara, too, the pills are not easily available and her husband has to go far to get her doses. Dr M R Rajagopal, the chairman of Pallium India and widely acknowledged as the father of palliative care in India, says that oral morphine reaches less than one per cent of the needy.

A drop in the ocean

Even today, 21 years after it was first introduced in the country, palliative care has barely pushed beyond the metros to some state capitals and larger cities. In 2005, the Department of Health and Family Welfare of the Government of India appointed a task force of 15 experts to assist and advise in the framing of the National Cancer Control Programme for the next five-year plan. Palliative care was one of the six features looked into.

Palliative care includes not just the patient but patient support and support of the family, for whom care-giving and watching a near one in unbearable pain is traumatic. It is about reversing crippling pain and giving the patient the opportunity to return even to a near-normal, self-reliant and economically viable life.

On April 28, 2007, the activist group Pallium India wrote to Health Minister Anbumani Ramadoss that although the budget for the National Cancer Control Programme was likely to be raised to Rs 2500 crore, the focus was on awareness and early detection. There was no separate allocation for palliative care although the Palliative Care Task Force had recommended a budget of Rs 50 crore to develop palliative facilities at various levels, besides training medical professionals.

Pallium India feared that not much attention and resources would be given to palliative care. They were taken aback to learn from the secretary of health that it was hoped that early detection would make palliative care redundant in 10 years. Scientifically, this is a wish that is yet to be proved true even in the most medically advanced nations. As Pallium India’s letter had pointed out, the world statistics for palliative care is one out of every two cancer patients.

Not allotting sufficient resources to palliative care, says Dr Rajagopal, means the medical establishment “will be free to continue expensive, high-tech treatment, even when futile, as most of them do now”.

In July 2007, the Supreme Court admitted a public interest litigation by the Indian Association of Palliative Care (IAPC) demanding “improved access to palliative care for those who need it in the country”, and arguing for the right to life and death with dignity.
IAPC requested the Supreme Court to direct both central and state governments to develop a palliative care policy.

Teaching palliative care The only hope for patients like Roshanara is concerted effort at all levels. “It is easy to blame the red tape and the government, but the medical and nursing professions at large, have not accepted palliative care as an essential part of health care,” says Dr Rajagopal. Palliative care needs to be included in undergraduate medical and nursing curricula; it has been referred to as the forgotten chapter in medical education.

Young medics like Dr Shakeel, who was selected for the Lucknow Palliative Care Centre, need to be exposed to palliative care. When he was asked to go to Kochi to train, he wondered what he’d learn in six weeks that he didn’t know from medical school. He came back transformed.

“I learnt to communicate with patients, to break the news of the diagnosis, to prescribe analgesics and morphine and adjuvants.” The stress, he believes, is still on curative rather than palliative, but few realise that the two can go hand in hand.

The concept of palliative care is going from the metros to smaller cities and villages, but will the morphine get there?

Method:-
What is Palliative home Care?
• This is palliative care for people in their homes.
• People who have palliative home care are people who:
• want to be cared for at home
• have needs which can be met by the program
• have a home where care can be provided
• have a doctor who agrees to care for them there
• may choose to die at home
• What services does palliative home care provide?

The services include:

• assessing the person's care needs
• planning how to look after pain and other symptoms
• emotional support
• other services such as:
o looking after the home
o having someone come in to the home so the person giving care can have a break
o washing, bathing
o equipment/supplies
o volunteers
• seeing that all parts of the care work together for the person

The ways in which social workers fulfill these aims are shaped by the populations they serve, their country and place of work, diverse cultural values, the people with whom they work as colleagues, the requirements and provisions of social policies and the scope for discretion in how with others. Much is conducted in negotiation.

Patient participation and user involvement are central to current thinking about the effective delivery of desired healthcare outcomes. Working with the person who lies behind every patient is core to palliative care. A voice can only become significant when it is listened to and acted upon/ With palliative care increasingly addressing the needs of people with a variety of conditions in a variety of settings, as well as with advances in research, technology and information, the challenge to be a ‘a voice of the voiceless’ is greater than ever. It is often somewhat glibly asserted that the patient is, or should be, at the centre of care. There have been few attempts to examine how to keep him or her out.

Palliative care is the active total care of patients suffering from life-limiting diseases and their families when the disease is not longer responsive to curative treatment. Palliative care

• Affirms life and regards dying as a normal process
• Neither hastens nor postpones death
• Provides relief from pain and other distressing symptoms
• Integrates the psychological and spiritual aspects of patients care
• Offers a support system to help patients live as actively as possible until death
• Offers a support system to help the family cope during the patient’s illness and in their own bereavement. Control of pain, of other symptoms

THE ROLE OF COMMUNITY


Disease brings in its wake a lot of physical and psychological difficulties for the patients. These multiply manifold if the disease is incurable and life shortening. Let us see the problems ordinarily faced by patients in our society:
• Physical afflictions such as the pain related to the disease, incurable sores, breathlessness etc.
• Anxieties about the disease and death.
• The debt trap into which the family falls due to the large amounts expended on the treatment.
• The problems, including debts that arise because of the inability of patients and their
• families to go to work.
• Bitter memories of the often humiliating treatment received at hospitals and elsewhere.
• Ignorance or nagging doubts about available treatment regimes.
• The difficulties of access to places where proper treatment is available.
• The spiritual problems related to life and death.
• Apprehensions about the fate of the family after the patient’s death.

It is not difficult to see that most of the problems are beyond the scope of a doctor or nurse or the hospital to solve. Most of the problems are social in nature. The mission of the social worker in the health sector is to try and understand the problems from the patient’s angle and solve them as far as possible

COMMUNICATING WITH PATIENTS

Effective communication is vital to strike up an active relationship with the patients and their families, leading to proper understanding and appreciation of their problems and helping them to cope up with. The patient has to get the feeling that he is wanted even if he were at a point of no return and sinking and that he would not be forsaken at any cost. Words may not be enough to convey these messages. Body language, touch is all equally important in conveying the message. Faulty communication can lead to misunderstanding and loss of faith in the care-giver and loss of optimism on the part of the patients and their relatives.
Creative communication involves the willingness to listen to all that the patient has to say, an eagerness to help the patient, an eye for detail while trying to understand the problems and while explaining things to the patients. Another important attribute is honesty and frankness to admit to ignorance about what one doesn’t know.

THINGS TO TAKE CARE:
• The environment;
• Facial expressions, body language;
• Listen carefully;
• The patient should be given the opportunity to discuss hid disease, the chances of recovery and the treatment with the doctor.
• Introduce yourself to the patient.
• Do not intrude into the privacy of the patient.
• Be a good listener.
• Show patience.
• Do not belittle the problems of the patient.
• Do not try to impose your views and beliefs on the patient.
• Do not sidetrack or ignore the patient’s questions
• .Do not promise anything that cannot be fulfilled. Symptoms of depression
• Lack of interest in daily chores.
• Loss of sleep, and nightmares.
• Extreme anxiety.
• Suicidal tendencies. If you suspect depression, seek medical help.