Long Term Care to Chronic Illness - Article Example

Long Term Care to Chronic Illness "Continuing care (or long term care)' is a general term that describes the care that people need over an extended period of time as the result of disability, accident or illness to address both physical and mental health needs. It may require services from the NHS and/or social care. It can be provided in a range of settings, from an NHS hospital or care home to care in people's own homes (where staff is available and it is judged clinically safe)."(Continuing Care 2001:3) Long term care to chronic illness is rather a question to be answered practically than on paper. But as anything theory comes before practical. When we hear 'long term illness' it is always cancer that comes into our mind. All cancers are a slap on the face of life as the patient faces the worst of pain-both mental and physical in an unlimited proportion. His/her woes grow like the cancer cells and the worst part is, the patient doesn't lose consciousness even when he suffers pain like death. One of the worst forms of cancer is lung cancer. As the illness is affected to one of the most important organ systems of the body, the suffering of the patient is beyond imagination. Before we get into the issues related to the disease and care taking, let us first learn about lung cancer. "Lung cancer at a glance: Lung cancer is the number-one cause of cancer deaths in both men and women worldwide. Cigarette smoking is the principal risk factor for development of lung cancer. Passive exposure to tobacco smoke can also cause lung cancer. The two types of lung cancer, which grow and spread differently, are the small cell lung cancers (SCLC) and non-small cell lung cancers (NSCLC). The stage of lung cancer refers to the extent to which the cancer has spread in the body. Treatment of lung cancer can involve a combination of surgery, chemotherapy, and radiation therapy as well as newer experimental methods. The general prognosis of lung cancer is poor, with overall survival rates of about 16% at five years. Smoking cessation is the most important measure that can prevent the development of lung cancer." (As cited in http://www.medicinenet.com/lung_cancer/page8.htm#tock ) Symptoms of lung cancer and the suffering: Lung cancer is one of those cancers which bring in the worst form of suffering to the patient. Before we move on to the physical and mental grief of lung cancer patient, let us have a look at the major symptoms of lung cancer which is the external expression of the patient's pathetic condition. "What are the signs and symptoms of lung cancer' Symptoms of lung cancer are varied depending upon where and how widespread the tumor is. Warning signs of lung cancer are not always present or easy to identify. A person with lung cancer may have the following kinds of symptoms: No symptoms: In up to 25% of people, who get lung cancer, the cancer is first discovered on a routine'chest X-ray'or CT scan'as a solitary small mass sometimes called a coin lesion, since on a two-dimensional X-ray or CT scan, the round tumor looks like a coin. These patients with small, single masses often report no symptoms at the time the cancer is discovered. Symptoms related to the cancer: The growth of the cancer and invasion of lung tissues and surrounding tissue may interfere with breathing, leading to symptoms such as cough, shortness of breath, wheezing, chest pain, and coughing up blood (hemoptysis). If the cancer has invaded nerves, for example, it may cause shoulder pain that travels down the outside of the arm (called Pancoast's syndrome) or paralysis of the vocal cords leading to'hoarseness. Invasion of the esophagus may lead to difficulty swallowing (dysphagia). If a large airway is obstructed, collapse of a portion of the lung may occur and cause infections (abscesses,'pneumonia) in the obstructed area. Symptoms related to metastasis: Lung cancer that has spread to the bones may produce excruciating pain at the sites of bone involvement. Cancer that has spread to the brain may cause a number of neurologic symptoms that may include blurred vision,'headaches, seizures, or symptoms of'stroke'such as weakness or loss of sensation in parts of the body. Paraneoplastic symptoms: Lung cancers frequently are accompanied by symptoms that result from production of hormone-like substances by the tumor cells. These paraneoplastic syndromes occur most commonly with SCLC but may be seen with any tumor type. A common paraneoplastic syndrome associated with SCLC is the production of a hormone called adrenocorticotrophic hormone (ACTH) by the cancer cells, leading to over secretion of the hormone cortisol by the adrenal glands (Cushing's syndrome). The most frequent paraneoplastic syndrome seen with NSCLC is the production of a substance similar to parathyroid hormone, resulting in elevated levels of calcium in the bloodstream. Nonspecific symptoms: Nonspecific symptoms seen with many cancers, including lung cancers, include weight loss, weakness, and fatigue. Psychological symptoms such as'depression'and mood changes are also common. (as cited in http://www.medicinenet.com/lung_cancer/page4.htm#toce) Symptoms though are not as terrible as the genuine horror of the disease, can weaken the strength- both physical and mental of the patient and by-standers. 'The game of fate' is not at all simple as the term 'cancer patient'. The situation brings in countless consequences and before we move onto the care-taking section, we have to learn the physical and mental issues that the patient goes through. Physical problems: The visible portion of cancer is the physical or tangible problems that the patient faces. This is the area to which a whole lot of drugs and treatments are administered and finally this is from where the patient begins with his/her recovery or ruin. Pain: Any cancer is the greatest experiment of patience of the affected person. Especially, when dealing with the case of a vital organ like lungs, the pain is nothing less than unbearable. Any human being has a certain limit to which he/she can suffer. Beyond that pain is always a torture. We can imagine the pain that we suffer when we have a bad head ache. Considering lung cancer, the harsh pain on the chest and the greater pain each time the person coughs and the trouble to breathe properly etc bring in the worst form of suffering. If metastasis occurs, the pain spreads to the neighboring areas as well and finally, it is better not to talk about the horror as it is beyond any word can describe. Effects of symptom control/drugs: Symptom control is one of the major forms of controlling cancer and helping the patient. But as the symptoms are really complicated and severe, the drugs implicated are also complex to the same proportion. Most of these drugs carry serious side effects which affects the patient badly. For instance, a patient who undergoes chemotherapy for lung cancer may have vomiting tendency, migraine and even loss of appetite. Many of the medicines while injected to the blood streams cause unbearable pain. They also bring in fatigue, insomnia, alteration of body organ system functions and even serious loss of mental strength. This is one of the curses that any cancer patient faces. Considering a lung cancer patient, unlike any other form of cancer, he/she is interrupted with the most significant function to keep life-breath. The situation can be understood in its true depth once a person feels it by him/her. Dissatisfaction of primary needs: Nobody wishes to fulfill their needs with the assistance of others. When coming to the fulfillment of primary needs, the reluctance for assistance is even more. But while considering a bed ridden cancer patient, he is nothing more than a pile of carcinogenic tissues and unhealthy cells. He has to seek assistance for breath, food, water and even excretion. This is not a condition which any human being would welcome. The dissatisfaction of these needs is more or less the weakening strength of the mental and physical health of the patient. A) Respiration: The most significant function of respiration is done with the assistance of oxygen mask and related apparatus. In case of other cancers, trouble to respire arise only in the secondary and further stages of the disease. But, here as the organ affected with cancer is lungs, patient has breathing disabilities, chest pain and similar disabilities right from the primary stage and once bed becomes the person's world, he has to seek the help of artificial breathing whenever necessary. This is often not sufficient and the patient suffers even to get air for his survival. B) Ingestion: Ingestion or normal intake of food and water is a difficult task for most cancer patients. The problems arise mainly due to three reasons. 1) Some food items cannot be taken with certain medicines. 2) The patient loses appetite due to the implication of certain drugs. 3) Ingestion becomes difficult because of pain. Lungs are situated close to the digestive system and therefore, metastasis to the digestive organs is yet another threat for a lung cancer patient. Moreover, when the patient becomes totally weak, he/she has to depend fully on another person to feed themselves. The food may even be given through tubes moving to the digestion tract through the nasal cavity. The patient with passage of time develops dry lips and even forgets the taste of good food and water. C) Excretion: This is one of the most embarrassing yet painful situations that the patients face. Excretion as such is difficult for them as their digestion process is not proper. Moreover there arises a need for repeated excretion due to severe pain. The patient cannot sleep properly due to the extreme pain and repeated tendency to use the rest room. After a certain stage, the patient cannot keep moving and has to empty his stomach sitting on temporary closet right in his room with someone's assistance. He feels the need to excrete repeatedly with the rise and fall of pain. He may not be able to move due to severe pain and the get up-go back process makes him even more tired. Also, the inability to ingest enough quantity of food and water to balance the repeated loss of water and minerals and heavy dosage of drugs bring in fatigue. D) Sexual needs: Any human being has the urge to mate and reproduce. A lung cancer patient cannot take enough energy to make love to his beloved. Regarding all the other needs, it is only the patient who has to take pain. But when it comes to sexual needs, the patient and his/her partner suffers too. Cancer is not the death of desire and therefore the patient feels lost when thinking about the desire and his/her partner being denied of their need. Women with cancer may not be allowed to conceive and in extreme cases, they lose the ability to carry their young one. Denial of motherhood is the worst punishment any woman can bear. Cancer puts shutter to every single aspect of life. E) Physical needs as a social animal: The person affected with cancer will be unable to fit into many of the societal needs and functions. Each person has his/her own sphere where he is supposed to socialize and interact with other people. A cancer patient can hardly move from his room's shade and the external world gets closed away from him. He cannot attend many of the occasions of which he is an inevitable part. He cannot move out when some one close to him passes away. He cannot move out to his arena of duty or work. He as a person dies with life before others. The society's face of sympathy brings in darker shades in him rather than a breeze of hope. He shrinks into his shell and this slow poisoning of physical incapability grows as a cancer into the person's mind. Mental problems: The cancer patients go through so many mental problems as they go through the worst trauma possible in life. They have to face all the possible woes as they themselves realize that death is close to them. Also, the family members who lack enough patience for long term care hurts the patient than serving them. This becomes another form of mental torture. Let us move on to various forms of mental problems that a cancer patient faces. A) Loss of hope: The first word associated with cancer is always death. Any person who comes to know that he/she suffers from cancer loses their mental strength. There are a very less proportion of cancer patients who retain their willpower irrespective of the pain and suffering they are going through. It is said that any disease gets half cured if the mind of the patient has the courage to ace the truth and act accordingly. Here in the case of the lung cancer patient, the extreme suffering is enough to rub off all the good things about life. So, at the first step itself, medication fails and cancer wins over the patient's mind. B) Sense of being a 'burden': When the patient loses his self-sufficiency, he/she begins to feel that they have become a burden to the family. The family has to take care of all their needs and the patient realizes what 'helplessness' is and how mean a life can become. Positive thoughts will not win over the extreme pain and the patient feels him/her to be a headache to others. Though they long for the family's love and care, in the heart of hearts, they keep asking "am I troubling my dear ones'" C) Isolation: When a minor proportion gets proper care and treatment, at least some of the patients face utter solitude. Many cases of isolating the patient have been recorded globally. This is one of the most common reasons why a lot of cancer care homes have been established. This is a situation which alters the mental stability of the patient. Parents are isolated by their children, life partner leaves the patient behind and the situation becomes pathetic. The parent who is suffering from cancer then would begin thinking of all those good things that they have done for their children. They feel the meaninglessness of their past which they spent loving their dear ones. They become orphans when they have everyone. D) Commitment to partner: Any person has an immense commitment towards their life partner. This bond of love is beyond anything. But when the patient has nothing to do except to struggle for breathe, they can't help to serve the functions that they ought to do towards their partner. Most of these would be those which could be done exclusively by the partner. This not only includes physical relationship but also the minor acts of love and care they exchange. The partner and patient feel the helplessness in the air of struggle to live. Both of them feel helpless and alone. E) Loss of independence and choice: Any person has his freedom to live his life as an individual. When life dissolves in the solvent called 'absolute dependence', the person's world gets confined to his/her room and he/she loses every possession that he/she owns as an individual and begins to live as a pile of dry leaves leaving behind the traces of the green days. Moreover the person will be compelled to accept many things though they are not to his choice. It is during the uneasy times that we seek refuge in our interests and choices. Here, the cancer patient though he is flat to the ground cannot keep his wishes and has to lean a lot of adjustment and patience. This is an added stress along with the physical strain taken by him/her. F) Effects on family and career: Family and career are the two legs of life. With the arrival of cancer, both of these legs get paralyzed and life is bed-ridden. Any person grows up with dreams and expectations as high as the sky. Always the dreams are directly or indirectly related to family or career. The person gets his/her career to make a family and then the family survives with his/her remuneration from the career. To an extend it is true that a part of love and respect gained from the family is as the person is a money earner. When he/she becomes a monotonously screaming human being with no element that appears interesting, the family attitude changes and so does the dream family. Regarding career, the person would have had a pretty well drawn sketch of his career goal and irrespective of whether or not he achieved the goal; he grows a love in his heart for his career. Any person will have an urge to succeed and reach greater heights. Suddenly when he is locked without chains to his bed unable to breathe coughing and wheezing, he is shattered to the deepest of depths. G) The effects of altered body image and physical suffering: Extreme physical suffering and if metastasis of the cancer occurs to externally visible areas, it gives the lung cancer patient an unexplainably pathetic look. Nobody likes to be called a sick person. When his/her body itself announces the condition inside, none can help the condition. The patient has to live his life with such a physical appearance which brings in an unwanted sympathetic atmosphere from the side of society. This sympathy emits an intense negative energy than a positive hope to the patient. H) Loss of privacy and dignity: A cancer patient is more or less a visitors' paradise. He/she in however bad condition they are will be visited by a number of people with whom they shared a good bond during their healthy times. As the number of visitors goes up, the lesser is the patient's privacy. As soon as he/she is diagnosed with cancer and bed-rest is instructed to them, the loss of privacy and the permanent tag of 'cancer patient' hang on their necks. They lose their privacy and dignity at the cost of their illness. Though the visits are out of the love and care of dear ones, the patient finds it annoying. Related ethical and legal issues: Cancer raises a number of ethical and legal issues in relation to the patient particularly regarding the power of attorney, inheritance of property and similar issues. The cancer patient needs to have mental serenity more than any other thing. But when it comes to property related issues, it not only brings in problems in the family but in most cases they also ruin the peace of mind of the patient. Various legal help lines are available for the assistance of cancer patients with their legal issues. Qualities of a by-stander: Before we move on to the other aspects of cancer care, let us have a general view on the things to be kept in mind while taking care of chronically ill lung cancer patient. Any by-stander should have these points in mind while dealing with those unfortunate lives. 1) Be patient: The cancer patient is going through unbearable pain and trauma. He/she is unable to carry out their basic needs without your assistance. Before you impatiently think of the difficulties that you face while looking after them, understand that this is a condition anyone can face today or tomorrow. You have no right to shout or show bad faces at them. Pain along with high dosage of drugs can simply make them arrogant creatures. Be patient and love them as yourself. Look into their needs carefully and love them and care for them with sincerity. 2) Be generous: Be generous to them. Most of them have no hope of survival. They are waiting for their final heartbeat. The stress that they are going through is unimaginable and they even they had dreams and goals and all the possible hopes about tomorrow as you have. They live as the graveyard of their dreams. Their past makes them feel even more helpless as they are unable to move or get along like those golden days. Their present is in pain and suffering and they have lost all hopes on future. In lung cancer, there is a very less percent of coming back to life or cent percent curing. So, please be kind to those synonyms of helplessness. 3) Be courageous and positive: If you are taking care of your parent or a close relative, it is true that you have a lot of smart cherished movements associated with the person. But now when he/she is on their final bed, you should not show your tears and sentiments at them. Bring in them a positive hope and positive attitude. This can indeed help them try recover even though recovery is just a dream beyond particular stages of cancer. Your true love should reflect in the way you make them genuinely happy and the way you bring in courage and positive attitude n them 4) Be alert: Cancer care can meet an emergency any moment. Don't tremble when your parent/child or close relative suffers extremely and shows uncontrollable pain and suffering. Be practical. Do all that you are supposed to do and have the common sense to manage the condition really well. If you go weak at heart, your dear one or the patient that you take care of may be lost because of your sentiments. 5) Be responsible Any drug that the patient takes comes under the category of life saving drug. Make sure you give it to them on time and in the required quantity. Even you may have your own needs and functions as a human being. But make sure the patient's needs are more important than your needs. The role of organizations in cancer-care: Organizations have always played a very important role in the care of cancer patients. They not only provide in hospital care but also appoint responsible nurses to look after the chronically ill cancer patient. The NHS or local authorities take care of these patients on the basis of various criteria. Every country of the nation has its own cancer care institutes. Palliative care is a branch of medicine as such now. The branch mainly deals with reducing pain and symptom control. Many of them are charity based organizations while some are government funded. Many of the organization members have touching stories about the isolated cancer patients and their pathetic situation. They take care of all the needs of the patients and in case the patient is in his or her own house, they train the family with basic knowledge on essential medical apparatus usage and the like (oxygen apparatus, catheter etc) The organizations have contributed greatly to the field of cancer care and they have helped in bettering the condition of so many people suffering the difficulties of the disease. "Palliative care focuses on improving the quality of life-not just in the body but also in the mind and spirit. Some people combine palliative care with curative care. Some treatments for advanced-stage lung cancer are considered palliative care. These treatments cannot cure the cancer, but they can control the symptoms, reduce pain, and make the person feel more comfortable. They include: Radiation therapy. Medicines, including chemotherapy. Therapies such as radiofrequency ablation, microwave ablation, or cryoablation that can destroy cancer cells without major surgery. Complementary medicine. In addition to helping the body feel better, palliative care can help the patient feel better emotionally and spiritually. Talking with a palliative care provider may help the person cope with his/her feelings about living with a long-term illness. It may also help their loved ones better understand their illness and how to support them. Or it could help them make future plans about their health and medical care."(as cited in http://health.yahoo.com/lungcancer-treatment/lung-cancer-treatment-overview/healthwise--tm1367.html) As we have a glance through Continuing Care: NHS & Local Council's Responsibilities by Department of Health, we see that any individual's continuous requirement for care falls into any of the three categories below at any point of time. (Continuing Care 2001:4) The 3 'categories' are as follows:- Category One Continuing NHS Health Care 100% NHS funded, including nursing and personal care Category Two: Continuing Health and Social Care Joint health and social care either in a care home registered to provide nursing care or care at home. For packages of care at home the NHS will provide primary and community health services. For people in a care home registered to provide nursing care the Registered Nursing Contribution to Care(RNCC) will be used to determine the NHS contribution - note this applies only to self-funders at present and not extended to all others until April 2003, therefore until April 2003 social services will remain responsible for fully funding people in this category. Category Three: Social Care Local Authority/self funders funded with the usual NHS services (e.g. GP and hospital services as required). Irrespective of the category, the organizations show great care in deciding the modes and strategies to look after the patient. As the citation in the concerned book we can see the responsibilities of the NHS as "NHS Responsibilities: (Reference HSC 2001/015: LAC (2001) 18) 1) Continuing NHS Health Care The NHS is responsible for providing all the health and personal care services required by people who meet the criteria for 100% NHS funding (category 1). 2)NHS services for people at home or in a care home who are not receiving continuing NHS health care The NHS is responsible for arranging and funding a range of services to meet the needs of people who require continuing physical or mental health care (S3 NHS Act 1977). The range of services which the NHS is expected to arrange and fund to meet the needs of their population either at home, in a nursing home or a residential home includes:- Primary health care Assessment involving doctors and registered nurses Rehabilitation and recovery (where this forms part of an overall package of NHS care as distinct from intermediate care) Respite health care Community health services Specialist health care support Healthcare equipment Palliative care Specialist transport services 3)NHS Services for people in nursing homes who are not receiving continuing NHS health care The NHS are responsible for arranging the following services for residents of nursing homes:- Access to GP and other primary care services (including community nursing) The provision of other nursing advice e.g. continence advice and stoma care Physiotherapy, occupational therapy, speech and language therapy, dietetics and Podiatry From October 2001 for self-funders and April 2003 for non self-funders, continence Pads and other related equipment. Palliative care" (Continuing Care 2001:7) Tendency to relate cancer with ageism: As death is often associated with old age, there is a wrong tendency for many to relate cancer with ageism. But as per a study of epidemiology of Aging in the older population of US, the least number of aged people suffer from cancer when compared to arthritis, heart disease, hypertension, diabetes, respiratory disease and stroke. Let us have a look at the graph cited in page number 641 of Primary Care and the Older Adult a multidisciplinary approach by Burke, M, M., and Laramie, J, A., (2000). It is evident from the graph that the least number of people suffer from cancer when compared to other chronic illness. WHO statistics on cancer - World Health Organization "According to the World Health Organization, cancer rates in developing countries are progressively approaching those in the industrialized countries, due mainly to an increase in the average age of the population, the control of other diseases, and the increase in use of tobacco. Most common cancers worldwide are stomach cancer (670,000 new cases each year), lung cancer (660,000) and breast cancer (570,000). Mortality trends for Australia, Chile, Finland, France, Japan, Poland, Sweden, United Kingdom and the United States show that stomach cancer is decreasing sharply in these countries, due to improved food preservation techniques and the resulting change in diet. Lung cancer, which is rapidly increasing in most countries--especially in women is likely to become the dominant cancer worldwide by the end of this century. Breast cancer death rates are generally rising, in spite of some recent declines." (As cited in Nutrition Research Newsletter','March, 1990 available at http://findarticles.com/p/articles/mi_m0887/is_n3_v9/ai_8841811/) Prevent lung cancer: It is evident from the statistics that lung cancer has become a subject to be considered very seriously. Let us go through a few steps which we can take in order to prevent lung cancer. "Smoking cessation is the most important measure that can prevent lung cancer. Many products, such as nicotine gum, nicotine sprays, or nicotine inhalers, may be helpful to people trying to quit smoking. Minimizing exposure to passive smoking is also an effective preventive measure. Using a home radon test kit can identify and allow correction of increased radon levels in the home, which can also cause lung cancers. Methods that allow early detection of cancers, such as the helical low-dose CT scan, may also be of value in the identification of small cancers that can be cured by surgical resection and prevention of widespread, incurable metastatic cancer."(As cited in http://www.medicinenet.com/lung_cancer/page8.htm#tocj). Therefore, it is very important for us to get prepared to fight this disease situation with proper prevention measures. Health educational classes, public awareness measures and proper control of the causative substances can prevent lung cancer to an extend. Let us have the hope and pledge to save us and our dear ones from this deadly disease. Also, let us take care of those unfortunate ones who are already in the grab of the disease. Reference: Bets Davis, MFA, Lung Cancer - Treatment Overview, accessed on 7th April 2009 available at URL, http://health.yahoo.com/lungcancer-treatment/lung-cancer-treatment-overview/healthwise--tm1367.html Burke, M, M., and Laramie, J, A., (2000) Primary Care and the Older Adult a multidisciplinary approach, St Louis Mosby' Department of Health, (2001) Continuing Care: NHS and local councils' responsibilities, London, DOH' 'Melissa Conrad St'ppler, MD, Lung Cancer, accessed between 2nd April 2009 and 7th April 2009 available at URL, www.medicinenet.com/lung cancer Nutrition Research Newsletter','March, 1990 accessed on 7th April 2009, available at http://findarticles.com/p/articles/mi_m0887/is_n3_v9/ai_8841811/ Read More