Palliative Care and Death Management at the End of Life

Introduction

Death is inevitable, but the news of probably death is hard to hear irrespective of the age of the patient or their disease. (Kirkpatrick, 2019) No one truly accepts death as a fact until faced with it. This paper will in detail my beliefs about end of life and how they were framed after taking the unit of palliative care management. I learnt about death management and caring for chronically ill patients. This paper will focus mainly on my beliefs about death and how palliative care unit evolved them. I learnt that caring for a dying person is tough but worthwhile because making someone comfortable in their last days is a great thing to do. But I also learnt that to care for someone it is equally important that a person is self-aware and partakes in self-care, which plays an important role in ensuring best possible management of a person dying. There are many specifications for the care of people likely to die and the care after death. With so much experience in watching death, palliative nurse, Nikki Johnston shared insight on The Good life podcast saying, “after my experience with so many deaths, it’s about living as well as you can.” In the second part of this paper the focus will be on nursing care for a dying patient and will focus on the management of physical sign and symptoms, holistic psychological and spiritual management of the patient. This part will also focus on the end of life care with reference to nursing practice and how my own practice can improve with proper physical, psychological and spiritual management. Nurses are the health care professionals who have primary interaction with patients, as they are the ones administering all the drugs. (Coyne, 2018) Palliative care is essentially dependent on pain management, patient counselling and making the patient as comfortable as possible, and upon death there are certain things that are to be taken care of. (Scammell, 2017)

Belief about end of life

Death is the ultimate end of all things alive. But, despite its certainty there is excessive fear of death. (Costello, 2018) It is a horrible experience and is the ultimate verdict (Chan, 2018). It is not just the end of a physical individual but also of abstract notions like the many plans made by the individual or the ones associated with them. For me death is the end of many dreams. The nears and dears of the dying person go through a trauma especially when the cause is unnatural like accidents or acute illness resulting in quick death; such situations leave lasting impact of the psychology of everyone present. (Bennett, 2019) My beliefs about death were rooted in my experiences, passive learning based on religious beliefs or associating their feeling based on their observations about death in books and movies. Health care professionals’ beliefs on death are stemmed in their experiences of palliative care and watching people die of diseases, breaking the news to their families and dealing with the stress of not being able to prolong the life of the patient they were caring for and treating. (Foley, 2018) After taking this unit I have enough clarity of how honourable it is to care for a dying person and how remembered our action and words be for the family of the patient. I learnt how to identify stress, burnout and/or compassion fatigue. Dealing with death is stressful and this fact should be acknowledged, this stress is amplified in conditions of overworking, understaffing and insufficient working conditions.

Before undertaking this unit my beliefs about death were only based on spiritual beliefs, life experiences like death of a friend or family I did not know how to manage a dying person taking into account their physical, psychological, and spiritual health. I always felt like there is a genuine uncertainty about death and felt that death is generally feared by all, for themselves and the ones they love. The family suffering on the death of a loved one is a life changing psychological trauma, sometimes requiring counselling and expert help to treat. The cultural shift with advancement in medical care and recent importance given to epidemiological public health interventions has uniquely re-defined the concept of end of life; dying has shifted from an unexpected and sudden event to an anticipated event following the development of a uncurable disease like some types of cancer or AIDS. Death is the ultimate end, but the end of life is an on-going process which begins, for some, with the development of disease which causes increased dependency on others resulting in partial to no autonomy. The end of life stage is sometimes prolonged to last for months even years with the right care but this is often done on the behest of their quality of life; they are alive but bed-bound with little to no autonomy. This has resulted in the public interest of patient-centred palliative care directed towards enhancing the patient’s self-sufficiency and providing medical treatment in accordance with the wishes of the patient and family.

Learning and changed experiences

After taking Palliative care unit I learnt how honorary it is to care for a dying person, making them feel comfortable and pain-free in their last journey. I learnt that its equally important to ensure self-care and be vigilant of my own self, my limits. Only 50 years ago the doctors hid the information about terminal illnesses and a patient likely to die soon. With the addition of shock with sadness, death of a loved became intolerable for the family. I learnt that, today, this is out of the question, the patient and family are continuously informed about the patient’s condition, and the patient and family are involved in the decision-making process regarding patient’s treatment. End of life care focuses on making death pain-free, dignified, and acceptable for the patient and family. Evidence suggests that people opt for dying among family rather than a hospital setting. Contemporary palliative care has certain components like pain reduction, supporting patient and family understanding of the situation. Patient’s right of self-determination is a contemporary concept endorsed by end of life care concept. I learnt that nothing eases a dying person’s mind than a good listener. They are worried about who will take care of, for example, their children or pets etc. reassurances from family members eases their anxiety.

I learnt that according to Nursing and Midwifery Board Australia (NMBA), palliative care must be strongly responsive towards the need and preferences of patients and their families. NMBA states that palliative care must be available to all people suffering from an advanced and progressive disease.  Terminally ill patients, if possible, are even sent home to spend their last days at home with their family and loved ones. I learnt that this setting of informed medical care delivery to such people enhances the acceptance and subsequent coping to likelihood of death by the patient and the family. Proper care of a dying patient provides many benefits and makes death sad but tolerable easing the process with informed consent, pain management and making the environment as comfortable as possible. (Tamaki, 2019) Changed experiences of palliative care have made choices extremely easy and understandable for families and patients. Under these changed dynamics of care delivery in contemporary setting, the patient and family experiences have evolved. There is no denying the inevitable end of life but with care its acceptance is increased. I learnt that according to NMBA, palliative care recognizes the inevitability of death in terminally ill patients and the care is directed towards making the process easy for the patient rather than bringing it forward or delaying it.

Self-awareness

Self-awareness is the cognizant familiarity with one’s own feelings, emotions, and/or character. Self-awareness is an important aspect of palliative care as well as frames the one’s own beliefs about end of life. I learnt that reflection is another important aspect, with reflection one becomes aware of their own thoughts, ideas, and beliefs. (Rising, 2017) This goes a long way because while caring for another person with emotional and psychological insecurities like a dying person, the care giver ought to be aware of themselves first to ensure effective medical and psychological care delivery to the patient. Another important concept is grief awareness; it is natural to be affected after seeing someone die even if the individual was only a patient. A health care professional must know how to take care of themselves before trying to take care of others. This makes identifying the stages of grief in patients and family easier: most people are in denial of their own health condition or their family member’s: this makes coping with death very hard. A health care professional must be able to identify and counter prolonged denial tendencies in patients or their family members. I learnt that negative emotions are the likely outcome of overworked nurses working in palliative care. (Cross, 2019) Compassion fatigue in nurses is associated with absorbing emotional stress of patients which creates a secondary traumatic experience for the nurses themselves. Self-awareness is the active realization of these developing tendencies which is the first step towards correction.

Understanding the needs of the patient, their desires, habits, and other personality related aspects are important aspects to understand the patient’s psyche. Self-awareness is crucial in understanding others. For someone, who know and understands themselves it is easier to understand others. Following Johri Window Model a nurse can achieve both, understand the patient’s psyche and also passively learn about themselves from feedback. A health care professional like a nurse can use it to enhance their perception of others. There are two core concepts of this model: first that trust can be acquired by revealing some personal information about yourself to others and second that a person’s feedback reveals a lot about you that you can learn from. By using this concept, a valuable understanding can be achieved with the patient. Nurses can use this model to understand the patient more deeply and ensure patient-centred management. Questionnaires can be an affective source of self-awareness for a nurse. A questionnaire inquiring about the patient’s or family’s perception of the palliative care administered by the nurse can provide substantial material on the nurse’s handling of the patient, which can be an effective source of self-awareness. (Hernández-Marrero, 2019)

Self-care

I learnt that  self-care is important when dealing with situations like the death of a patient. Palliative care takes a toll on all members of the care delivery team. In such a situation where patient is about to die the care delivery team must be mindful of what is happening and what are the best possible solutions to ease the process for the patient and the family. To do this well the health care providers like nurses must be in most control of their thoughts and emotions. It is a test of their ability to work under stress and they must be ready for it. It may be their responsibility, in conditions when doctors are unavailable, to break the news to the family of the patient that there is increased likelihood that the patient may die soon if their vitals are seen deranged. Stress is a common occurrence when working in such conditions, but stress management is key. Making self-care a priority is an essential part of stress management. Stress management includes working in the tolerable limit, soothing exercises and yoga has shown to be very effective in relaxing the minds of health care professionals working in intensive care units (ICU) and emergency rooms (ER).

Responsibilities like conversing with family after patient’s death can be stressful and extremely hard. There are certain things a nurse must do right away upon a patient’s death. These include informing the General Physician or the out-of-hours doctor. All tubes, drains are to be removed quickly, and the presence of any equipment which must be left in situ must be informed to the attendant, completing mortuary form and calling the porter for the delivery of the body to the mortuary is often also a nurse’s duty, returning the patient’s property (jewellery, watches etc.) to the family as per hospital policy and other departments of the hospital must be notified to cancel any planned appointments or procedures. I learnt that mindfulness of the nurse is key to completion of all these tasks in a timely manner for which it is essential that the nurse is in sound health and under no undue stress. (Nunes, 2019)

Role of nurse

1)    Physical care

Pain, how will I assess and manage

Pain and slight tenderness are usually the feature symptoms of a breast carcinoma. In early stages of breast cancer, pain and tenderness are not common, but can present in the later stages in which the tumour has metastasized and is pushed into the other parts. Reddish coloration and nipple pain are the common symptoms of breast cancer. Location and pain symptoms depend upon the location of metastasis. Patient presents with headache, if the cancer is spread to the brain tissue and with joint pain is bone metastasis is involved. Annie (Annie) is a patient of recurred breast tumour and her cancer has metastasized into liver and lungs. She is facing symptoms of cough and breathlessness. In liver metastasis, pain is usually in the right upper quadrant of abdomen and a referred pain in right shoulder. In lungs metastasis, pain is felt in chest and in ribs. Annie is suffering from liver and lungs metastasis so I, as a part of nursing care system, must assess her pain and manage it accordingly. I will be keeping a monitoring record of patient’s pain history and medications. The usual pharmacotherapy will be done for the patient with analgesics and painkillers. I will be administering the first line drugs are the NSAIDs, nonsteroidal anti-inflammatory drugs, which include ibuprofen, naproxen, diclofenac (Ferrell, 2018). Paracetamol, also referred as acetaminophen, and aspirin can be given under doctor’s prescription. Cold packs and cryotherapy can also be used as an effective pain management technique.

Nurses are in the closest contact with the patients and their attendees, and thereby are in a suitable position to assess and manage pain. Diagnosis and assessment of pain is required to make and effective treatment plan for the patient. My goal of pain assessment as a nurse is to monitor the indications of pain, record the techniques used of assessing pain and proper documentation of the pain record. Pain must be evaluated by a multidirectional approach. I will assess and monitor pain symptoms according to its onset, character, location in the body, duration, timing, severity. I will also record the aggravating and relieving factors, and associated symptoms of the pain. (Grech, 2018)

Management of pain is done based on its character. Acute and chronic pain are treated differently. In acute pain, pain relieving techniques are used whereas the root of the cause is cured in chronic pain. I am readily available for my expertise in acute pain management. I can manage pain by a multidisciplinary approach by using analgesics, NSAIDs, physical therapy, cold packs, cryotherapy etc. (Hinkle, 2018) NSAIDs, including naproxen and ibuprofen are very effective. Cold packs are a fast-pain-relieving technique in which a bag of cold water or ice is placed on the patient’s body part for a few minutes. It relieves pain by decreasing the blood supply and decreasing the sensitivity of pain receptors. I will prefer that pain management technique differs for every person and everyone patient should be treated according to his required treatment.

Skin Care, how will I Assess and Manage

Skin is known to be the largest organ in human body and protects us from harmful external harms of the world like infections, radiations etc. It is an essential and aesthetic body part which is to be taken care of all the time. In every patient with any disease, skin is an organ of a special attention for its changing appearance. Cancer patients, like Annie, must undergo treatment procedures which are unhealthy and dangerous of the skin. Annie underwent radio and chemo therapies for her breast cancer and can have skin associated symptoms like thinning, redness, patches, inflammation, dryness etc. Chemotherapy can cause itching, increased sensitivity, acne, and rash. Some drugs and medications cause dilatation of blood capillaries causing redness and flushing. Some drugs may cause hyperpigmentation and cause darkening of skin. (Sharma, 2019)

As a nurse, it is my job to assess the skin condition of my patients. I will monitor the skin changes and start my assessment from general physical examination of my patient, approaching with physical inspection and finally, palpation. I will investigate the past medical and skin history of the patient, with a detailed family history about skin diseases or allergies etc. I will also acquire patient’s cosmetic history about his skin care products the patient uses. In GPE, I will examine skin texture, colour, temperature, turbidity, scars, and any other abnormality. I will document and keep a record of my patient’s skin changes. (Su, 2018)

Management of every disease or abnormality requires a multidimensional approach. I will look for my patient’s nutrition status, food and drinks he is having and the fluid intake. Bed soars in cancer patients are common, so i will make a healthy routine for the patients for regular exercise and movement. Ointments and moisturizers are useful for the dryness and scars on the skin. I will suggest the patient to adopt a healthy bathing routine with three to four-time bath a week. Sunblock creams and medications can also be helpful in bacterial or viral infections.

 

2)    Psychological care

I feel like palliative care has a lot to do with psychological management of the patient. Knowing that death is around the corner is a devastating feeling and the patient at some point will likely experience depression. Picking up the signs of depression in such patients is crucial and a nurse being in active interaction with the patient, should be aware of any depressive withdrawal tendencies arising in their patients. Family counselling is a responsibility of the entire health care delivery team especially nurses because of their continuous interaction. Upon discovering such tendencies or even before a psychologist must be called for consultation by the nurse. Anti-depressant drugs can be given to patients diagnosed with depression. A nurse will be administering these drugs and will witness improvements (if any) with these drugs. The patient and family van be involved in a collective therapy session or such venture to keep the patient and family motivated. Diversional therapy is another alternative that can be sought to sound psychological health. The main aim is to reassure the patient that he is not responsible for the illness nor he is the only person suffering from the current disease. Nursing staff and junior medical staff needs to have special training for rehab of such patients. Nurses should develop a new outlook for the patients, check for what they can change and what they cannot. Sometimes, a simple conversation with patients can be very helpful, reaching out their family and friends, acting to be a spiritual leader will generate a sense of care. Stress management therapies, energy therapies, nutrition, exercise, private time can be very helpful in coping difficult times for terminally ill patients. (Hinkle, 2018)

Diagnosis of an incurable disease effects the health of the patient both physically and emotionally. Sometimes, treatments of cancers, such as radiotherapy and chemotherapy cause mild cognitive changes in patients including problems of concentration, fear, memory, coordination etc. which are likely to persist for the rest of their life. Patients will suffer from lifelong depression, mental pressure, psychological stress which needs to be managed on the right time.

I will assess Spiritual, social, and emotional support of the patient to defend himself from the stress and mental trauma he is suffering. I will try to lessen the continuous worry about the family’s future, external concerns about the children, treatment cost, can lead to emotional disturbances. I will evaluate patient’s behavioural changes to diagnose any kind of emotional and psychological change. The thought of leaving this world at a very young age will cause more depression, anxiety, feeling of guilt and isolation. (Zheng, 2018) Communication of nurses with the patients is the key to judge a patient’s psychological behaviour. Other signs which I might notice, include loss of appetite and weight, loss of hair, skin changes, postural changes, communicational changes, lack of concentration, fear etc. I will be aware of my patient’s conduct and would be able to assess a slight change in it.

While a patient may appear different, he still is the same from inside and can enjoy and celebrate his wellness if treated and managed with proper care. A sideway management of stress needs to be done by my side along with the disease related symptoms. I have a vital role in emotional management of the patient with a sense of love and care. I will assure the patient that everyone loves her, and she will be remembered after death. I have an adequate knowledge about psychological behaviour of patients and how to manage stress and depression. I will administer medications such as anti-anxiety and anti-depressive drugs can help the patients to cope with their psychological fears, but the actual and true solution is the inner peace. My goal is to bring my patient Annie back to her religious activities of Buddhism. She will feel better and relaxed with a thought in mind that it will save her at the judgement day. Medical staff needs to have special training for rehab of such patients (Frey, 2018). I will develop a new outlook for the patient, will check for what they can change and what they cannot. Patient should be spending a lot amount of time with her family, remembering her old memories of enjoyment, watching old photo albums of family videos for self-satisfaction. Sometimes, a simple conversation with patients can be very helpful, reaching out their family and friends, acting to be a spiritual leader will generate a sense of care. I can go for stress management therapies, energy therapies, nutrition, exercise, private time can be very helpful in coping difficult times for terminally ill patients. (Hinkle, 2018)

3)    Spiritual care

Spirituality:

Spiritual care is a basic entity for a patient’s treatment along with the physical and psychological care. Health system believes that spiritual comfort of the patient is essential for improvement in his illness and life quality. Spiritual care means to address the patient’s religious and divine concerns and to fulfil the gap in the patients holy attributes towards life as he survives his disease, ailment, pain or sorrow, and helps the patient to rebuild physically as well as his spiritual wellbeing. The word “spirituality cannot be defined in a single sentence, but generally, its everyone’s right to experience spirituality; it brings change in one’s mind and a sense of satisfaction; can show hope for the patients in their times of suffering and illness; it heals the patient from inside and gives him the confidence that he is socially and physically like other human beings.

Assessment of spiritual needs:

Assessment and addressing to the patient’s spiritual needs is a fundamental requirement of a quality nursing staff management. The nursing staff must be assured in assessing and monitoring the spiritual elements of the patient. The satisfaction and satire of such needs of patients results in a healthy environment with the person’s spiritual growth. (O’Brien, 2019) Providing spiritual and sacred mental health care to patients is the biggest challenge for a nurse in modern day health system. Researchers and health physicians have come up to a conclusion that a full proper health recovery can only be made if being sensitive to the person’s spiritual desires. Patients during their suffering times, want to get close to their religion and indulge themselves in their own worship activities. The only way to assess the needs is to communicate with the patient. Nurses and junior paramedic staff are the first point of contact between the patient and health care system. Taking clues from the patient; to provide a Christ like frame of mind; ask the patient if he needs some assistance spiritually; to support the patient’s own religion of faith; to ask them for praying with them; listen to their problems and find a solution; are the small techniques to ensure the need of spiritual care of the patient.

Managing the depression of the patient and family:

One of the pillars of a heathy nursing care is the use of good communication skills. A healthy patient-nurse communication comprises verbal as well as nonverbal forms of communications. The use of facial expressions, emotional gestures, body attitude, is the part of nonverbal skills of the nursing staff. There are main thee principals which should be followed all the time, when communicating with a patient; listen to the patient quietly and admit that he is always right; build and atmosphere of active listening; talk with honesty, frankness and heart. The family of the patient is going through a really tough time; they are to be made aware of the entire situation. Dealing with the family is also often the nurse’s duty and has to convey most of the information regarding patient condition to the family. The nurse should be vigilant of any depression symptoms rising in any family member. Their counseling is important, their role must be explained to them in the treatment of the patient. They must be reffered to a specialist in cases of developing depressive behaviors like withdrawal, isolation or aggressive reactions.

How to provide spiritual care:

My goal is to make my patient feel comfort and peace. There are multiple spiritual support techniques depending upon the type of spirituality, the patient is living in. Different people have different ideas and concepts about religion, spirituality, life, death, after death etc. My goal is to determine the right spiritual strategy for my patient. My patient is a Buddhist and wants to practice her religious practices in her last days. I will provide her free time and let her pray and perform her religious practices. I will provide her practical help as she would be needing it in her advancing illness. I will talk to her about her spiritual concerns, worries and fears, and try to help her in lowering her fear of death. Spiritual and religious care allows a patient to believe that she has done her religious duties in her life and helps her over coming the fears of punishments in after death. I will provide her separate time for a writing session, in which she can write all about her self, her fears and what ever doing in her thoughts about death. Spiritual care is a team work of palliative care team of the hospital. I will work with my chaplain staff for exploring my patient’s spiritual needs. I will talk with the hospital psychologists and religious counsellors and plan the best spiritual care for my patient in her last days. (Testoni, 2019)

Conclusion

This paper focused on my personal beliefs about death, how they were framed and developed taking this Unit of palliative care. Special considerations are required in the care of a dying person, the treatment should be specially sensitive to the dignity of the patient and should be in accordance to the wishes of the patient and family. The paper focused on the nursing care of dying patients. Nurses provide medical, physical, psychological and spiritual care to patients in their homes and hospitals. Role of a nurse is very useful and critical in the wellbeing of a dying patient because of increased interaction with patient and family. Apart from medications and disease management, rest of the entities in the treatment depend upon the nurse. Role of a nurse includes assessing physical care requirements and spiritual care, monitor and record patient’s vitals, provide religious and moral support to the patient, nutrition etc. In patients with chronic, untreated illness, a nurse has a vital role to play in emotional support of the patients and bring his rest of the life at peace and comfort.

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