Concerns about improving care at the end of life began to surface as far back as the 1950s. Clark (2002) states that while the decades before were characterized by a fatalistic resignation of the doctor, the following decades adopted an active approach where new and imaginative ways to continue caring up to the end of life. This trend of seeking ways to improve end-of-life care continues to date and is the basis of palliative care. Palliative care is defined as “the total care of people whose disease is not responsive to curative treatment and includes control of symptoms, in particular pain, and care of the family of the dying person” (Davies, 2004,). These care aims to improve the quality of life of the patient by addressing not only their physical but also emotional and spiritual needs. In the recent past, I worked with a patient who was receiving palliative care, Mrs. Mary Smith (name changed to protect identity). This paper will review the care of Mrs. Smith with particular focus on what could have been done to improve her care. Evidence from research and studies on palliative care will be used to reinforce the suggestions made.
Mrs. Smith’s Case
Mrs. Smith was born in Egypt but moved in 1942 and moved to Australia in 1998 with her husband and 3 sons. She was diagnosed with Breast cancer in 2006 and by 2010, the cancer had spread over all her body. Mrs. Smith was discharged from a hospital and admitted to a nursing home where she received palliative care. In her case, palliative care was necessary since while the cancer could not be cured, treatment for pain and emotional suffering could be provided. While Mrs. Smith’s palliative care was good enough, there are things that could have been done to make it better and hence ensure that she had a “good death”. The following is a detailed discussion of what could have been done to improve her care.
Access to Allied Health
While receiving her palliative care, Mrs. Smith did not have good access to allied health. The Allied Health team is a multidisciplinary team that includes, among others, social workers, physiotherapists, dieticians, and occupational therapists. These professionals have competencies that are relevant to the provision of palliative care for the patient. The allied health team could have assisted Mrs. Smith to deal with her imminent death better. The fear of death and the process of dying that Mrs. Smith faced is common because of the lack of control felt by the patient. This fear can be alleviated by having professionals talk to the patient and her family. It is therefore important to discuss the feared terminal events with the patients and relatives (Charlton, 2002).
By having access to an allied health team, Mrs. Smith and her family could have fostered a relationship that would have been beneficial. Abbey et al. (2008) suggest that the knowledge and relationship of the palliative care nurse with the patient and his or her family is vitally important. This relationship results in trust by the family in the professional who would otherwise be viewed as a stranger. The professional is therefore better positioned to enable the patient and their family to “acquire strategies of anticipated grief and consolidates the feeling of ‘self-control'” (Schmidt, et al., 2009, p.194).
Doctors Available 24/7 at the last stage of dying
In her last stages of dying, the patient’s physical health deteriorates greatly. The presence of a physician at this stage can help to alleviate the sense of a loss of control felt by the patient and his/her family. Research carried out by Powis et al. (2004) on how to make a good death better demonstrated that patients and families identified better access to physicians as one of the actionable steps for improvement in end-of-life care.
An attending physician is recognized as the most knowledgeable physician regarding any patient’s medical condition. Communication between the physician and the provider of end-of-life care is therefore paramount to the successful care of the patient (Mitchell, 2005). Findings from a study by Heyland (2006) indicated that patients and their families placed great importance in having trust and confidence in the physicians caring for them or their loved ones. Mrs. Smith’s last stage of dying could therefore have been improved greatly by having fulltime access to a physician.
Counseling for the Whole Family
Kinzbrunner and Policzer (2010) state that a unique feature of end-of-life care is that the patient and family together make up the unit of care. As such, the palliative care program should have adequate family support services. Undoubtedly, the knowledge that death is imminent has a profound effect on the patient and their family. Mrs. Smith’s family was affected by her family and counseling would have assisted the family to better cope with the situation. The experience of a life threatening illness affects the whole family and communication with the family of the patient is important since they form part of the care team. Research indicates that there is no benefit or advantage of refraining from talking about the realities of death with a terminally ill patient (Schmidt, et al. 2009). Mrs. Smith’s family was unwilling to face the reality about her condition and did not want to talk about it. While denial is a typical coping mechanism when dealing with imminent loss, it is unhealthy if people get “stuck” in this phase. The family was unwilling to come to terms with the fact that Mrs. Smith was dying. This led to the whole family being upset about her health condition while at the same time denying all the information which pointed that she was dying. When the family visits Mrs. Smith, they do not want to talk about the illness and treatment or progress of the cancer.
The family did not want to know the prognosis of Mrs. Smith’s condition which resulted in heightened anxiety. A counselor could have helped the family to come to terms with the reality and hence alleviate their anxiety and mental distress. The counseling efforts would be more effective if they were conducted by a professional who is conversant with Arabic language and culture. This is because Mrs. Smith and her Husband both spoke little English which would result in a language barrier between them and an English speaking counselor.
The grandchildren who are aged 3 and 5 were confused and disoriented since they could not understand what was going on with their grandmother. Talking to children about their relative’s illness is the task of the parents. Research indicates that children’s anxiety levels are lower when there is open communication within the family (Charlton, 2002). Parents should be offered help by the palliative care professional in disclosing information about illnesses.
After death of the patient has occurred, emotional support and bereavement counseling for the family is necessary since research studies have established an increased risk for morbidity and mortality among bereaved spouses (Portenoy & Bruera, 1998). The family of Mrs. Smith will suffer from major adjustment issues since the central issue – caring for the patient- is now gone and little can replace this demanding, meaningful and intense experience.
The room where Mrs. Smith stayed was an important place since this is where she spent most of her time. The atmosphere of the room was good and there were decorations in a more home-like fashion. Even so, the room was not big enough to accommodate the family members who wished to stay with their mother/wife. The family members could therefore only visit her and this meant that Mrs. Smith spent a lot of time alone. This isolation had a negative effect on her psychological well being. A bigger room with provisions such as an extra bed would have made it possible for family members to spend more time with the patient.
Better Understanding of Cultural Background
Patients and their families cannot be adequately understood without knowledge of their sociocultural backgrounds. Mrs. Smith’s case could have been handled better by taking into account her Egyptian background and the heavy Moslem influence on her lifestyle. While the crisis that comes with death challenges each person uniquely, McNamara (2004) asserts that the meanings associated with living and dying are the products of culture. This assertion is corroborated by Berger (1967) who commented that death is a social, communal phenomenon.
Sociocultural attitudes exert considerable influence as patient’s approach the end of their lives and knowledge of these attitudes can result in better palliative care being offered. Portenoy and Bruera (1998) assert that there have been efforts to increase sensitivity about the importance of integrating sociocultural influences into an overall assessment of the patient and family. While the influence of cultural constructs in the Smith family may be expected to diminish over time as the family is assimilated into the predominant Australian culture, the attitudes and values of Mrs. Smith and her Husband are more consistent with those of their Egyptian background.
Findings by a study on Cancer-related pain in palliative care conducted by Bostrom et al. (2004) showed that there needed to be open and honest dialogue between the patient and health care professionals about all the patient’s pain-related problems. For proper communication to take place, the communicating parties have to understand each other. Proper understanding can only occur if the cultural background is taken into consideration since culture influences the way we interpret and make meaning of situations.
Powis et al. (2004) state that improvement in end-of-life can be best grounded in the perspective of individual patients and their families by focusing on issues that they deem to be important. As such, a pastoral counselor would have been a very useful member of the palliative care team for Mrs. Smith. This is because in Mrs. Smith’s case, religion played a major role in her life. This can be seen from the patient’s notion that her illness was God’s punishment for not being good enough in her life and from the painting of Jesus and the 12 Apostles and her son hang in her room.
Extra Staff to Chat With Residence
Mrs. Smith spent most of her time in isolation which was not good for her psychological well being. This isolation is what caused her to be apprehensive about her dying. Clark (2002) asserts that patients in our modern culture dread not so much the state of death as the process of dying. Having somebody around to talk to can help reduce the anxiety and fear of dying (Molloy & Guyatt, 2001). Staffs share in the struggle by the patients and families to deal with the sadness that comes from the reality of an imminent loss.
While receiving palliative care, Mrs. Smith experienced a range of emotions. Sourby (1998) states that the psycho-social impact of dying are monumental and they involve searching for meaning and trying to deal with the loss of control. The impact of dying on Mrs. Smith was great and she experienced guilt, anger and isolation. Having someone to talk to could have helped Mrs. Smith to come up with meaning and hence deal better with her imminent death (Froggatt et al., 2002).
Palliative care embraces a number of different frameworks and approaches and palliative care teams include nurses, doctors and volunteers among others (Crawford & Price, 2003). Studies indicate that full-time and properly trained end-of-life care staff are more responsive to patient and family needs than contracted staff. Committed staff will be more sensitive to the needs of the patients at emotionally challenging times.
Pain is a highly prevalent symptom among cancer patients and as yet there is no universally accepted cancer pain assessment tool (Hjermstad, et al. 2008). Mrs. Smith experienced pain and was under medication which included nonsteroidal anti-inflammatory drugs and opioids. These drugs have been proven to be effective in pain management (Qaseem et al., 2008). Undoubtedly, conventional treatments as the ones named above are the most widely used and accepted by the health care community. Even so, complementary therapies may be used to help better cope with the symptoms of cancer of the side effects of conventional treatments. In the last stages of her illness, Mrs. Smith’s pain could not be relieved by the pain management medication that she was using. Cancer Council NSW (2008) states that these therapies can be a source or comfort and relief for people having palliative care.
While not all complementary therapies are scientifically proven to work or even be safe, there are some which are valuable and help improve palliative care. For example, the problem of anxiety can be eased by practicing meditation. While massages are known to reduce pain and fatigue, Mrs. Smith rejected the offer for some king of gentle massages. This may have been the result of her cultural background since she is from Egypt and is heavily influence by Muslim lifestyle. An alternative therapy such as Aromatherapy may have been more appropriate for Mrs. Smith. This therapy uses aromatic essential oils and it helps relief fatigue, pain and even sleeplessness (Cancer Council NSW, 2008, p.44). Aromatherapy is also proven to help in relaxation and gives a sense of calm hence helping to reduce depression.
Pain is a significant problem for many patients with cancer despite the various pain management regimes used (Duggleby, 2000). Management of pain should be an individualized process since pain perception is an individual experience. Moreover, pain is not only a physical experience but may include other factors such as emotions and social circumstances (Charlton, 2002).
More and Better Information
The final decision maker in palliative care should be the patient. As such, the patient should be equipped with information that they can use to make sound decisions concerning their care. Resnick (2001) reveals that there is a general perception among health care professionals that bad news will provoke a high level of anxiety in the patient and their family. As a result of this, health care professionals choose to remain quite even when the patient is aware of his or her situation. This general perception is wrong and findings by Schmidt, et al. (2009) indicate that family’s ignorance of diagnosis results in a higher prevalence of disorders like depression and anxiety.
A study by Taylor (1992) indicated that proper adjustment to illness was positively correlated with a sense of meaning. As such, the palliative professionals who work with chronically ill patients should look out for adjustment problems and look for means to solve them. Perceived loss of control is a predictor of psychological distress as was witnessed in the case of Mrs. Smith.
Availability of information has a number of significant advantages. To the patient, information allows them to make informed decisions about their treatment and care. Healthcare professionals on the other hand find it easier to treat and care for patients who are aware of their diagnosis (Charlton, 2002). The family is also able to say goodbye to their loved one and hence avoid feeling guilty when the patient dies.
The social networks for the patient are reduced in the final phase of a terminal illness since the patient may be afraid of upsetting or depressing their family or friends or may wish to have space to come to terms with their feelings. In her final stages, Mrs. Smith preferred to be left alone in her room. This contributed to her stress and anxiety since it reduced her social support system. The importance of a patient’s social support system is crucial to palliation and ways to increase this social support should be explored for each individual patient (Sourby, 1998). Mrs. Smith’s family declined all kinds of social functions because of her medical condition. This had a negative effect on the entire family since it decreased the social support that the family could depend on. The palliative care professions should have encouraged the family to engage in social functions and hence maintain the social support that would serve an important role when the family was coping with loss.
Palliative care practitioners aim to ensure that the patients die in a peaceful way and that their families are able to reconcile themselves to the fact that the patient is dying or dead in a healthy manner. This paper set out to review the case of a client who was receiving palliative care and whom I worked with. From the discussions presented in this paper, it is clear that there were many things that could have been done to improve the care afforded to Mrs. Smith. These good practices could have reduced even further the physical as well as psychological suffering experienced by the patient and the family.
Abbey, J. et al. (2008). Develop, trial and evaluate a model of multi-disciplinary palliative care for residents with endstage dementia. Brisbane: Queensland Health and Queensland University of Technology.
Berger, P. (1967). The sacred canopy: Elements of a sociological theory of religion. New York: Anchor Books.
Bostrom, B. (2004). Cancer-related pain in palliative care: patients’ perceptions of pain management. Journal of Advanced Nursing, 45(4), 410–419
Cancer Council NSW. (2008). Understanding Complementary Therapies A guide for people with cancer, their families and friends. Wales: Cancer Council New South Wales
Charlton, R. (2002). Primary palliative care: dying, death and bereavement in the community. Boston: Radcliffe Publishing.
Clark, D. (2002). Between hope and acceptance: The medicalisation of dying. British Medical Journal, 324(1), 905-907.
Crawford, G.B., & Price, S. D. (2003). Team working : palliative care as a model of interdisciplinary practice. The Medical journal of Australia, 179 (1), S32-S34.
Davies, E. (2004). What are the palliative care needs of older people and how might they be met? Web.
Duggleby W. (2000). Elderly hospice cancer patients’ descriptions of their pain experiences. American Journal of Hospice and Palliative Care, 17(2), 111–117.
Froggatt, K., et al. (2002). The provision of palliative care in nursing homes and residential homes: a survey of clinical nurse specialist work. Palliative Medicine 16(3), 481-487.
Heyland, D.K. (2006). What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 174 (5) 627-633.
Hjermstad, M.J. et al. (2008). Pain assessment tools in palliative care: an urgent need for consensus. Palliative Medicine, 22 (1), 895–903.
McNamara, B. (2004). Good enough death: autonomy and choice in Australian palliative care. Social Science & Medicine, 58 (1), 929–938.
Mitchell, G. (2005). General practitioner, specialist providers case conferences in palliative care. Australian Family Physician, 34(4): 1-4.
Molloy, D. and G. Guyatt (2001). A comprehensive health care directive in a home for the aged. Canadian Medical Association Journal, 145(4): 307-11.
Portenoy, R.K., & Bruera, E. (1998). Topics in palliative care. Oxford: Oxford University Press.
Powis, P. et al. (2004). Can a “good death” be made better?: A preliminary evaluation of a patient-centred quality improvement strategy for severely ill in-patients. BMC Palliative Care, 3 (2), 1-8.
Resnick, B. (2001). End-of-Life Treatment Preferences among Older Adults. Nursing Ethics, 8(6): 533.
Schmidt, J R., Garcia, P.M., Juarez, M.R. (2009). Bad News for the Patient and family? The worst part of being a health care professional. Journal of Palliative Care, 25 (3), 191- 196.
Sourby, C. (1998). The relationship between therapeutic recreation and palliation in the treatment of the advanced cancer patient. Web.
Qaseem, A. et al. (2008). Evidence-Based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life: A Clinical Practice Guideline from the American College of Physicians. Ann Intern Med. 148 (2), 141-146.