We Need to Talk about Death

“To the well organized mind, death is but the next great adventure”- Albus Dumbledore

You don’t have to be staring down the barrel of a terminal diagnosis to understand that death is a scary subject. In sitting down to write this article I also came to realize that attitudes towards death can vary as much as attitudes to life. The obvious factors such as religion, culture, level of education, upbringing and past experiences of death (mostly the death of others around us but occasionally a near death experience)  influence how we feel about our own mortality. Around the world and throughout history the place beyond death has been described as a land on the other side of a river we must cross, a place beyond the clouds where all our problems dissipate or simply a gateway to another life where the cycle continues. Most cultures incorporate a god of death or personification of death into their religion and mythology and of course we all have our own rituals surrounding death and dying.This is because death is as much a part of life as birth and everything in between. Many people find strength in defaulting to these rituals around death as it gives them purpose in a time of crisis. A sense of knowing what to do during a time of uncertainty and the unknown. This protocol helps the dying and their relatives to feel like they have some structure and control over the event and therein lies the key- control. Death comes to us all but we can feel slightly better about it when we have some sort of say in how or when it happens.

Attitudes towards death in our society have changed dramatically over time. Historically death was viewed as a natural event with the dying person in charge, no health practitioners no hospitalization. Most people died in their own home, in their own bed. More recently, death is something to be “managed” by a team of doctors and nurses in a hospital. These changes have both positive and negative aspects for the dying person. One could argue that the regulation or institutionalization of death i.e. moving death into a hospital setting, is perhaps just another way for us to feel that sense of control over a situation we really are powerless against. That somehow the “management” of death by a health care team and all the protocols that go with it fills the void left by the rituals and customs of religion and culture. There may be elements of truth to this. That being said, the ability of the health care system to improve the quality of life and the quality of death for the dying person is undeniable. Having worked closely with terminal patients of all ages for a number of years I can attest to the existence of a “good death”.  Pain control, comfort measures and maintaining patient dignity are the cornerstones of palliative care. The hospice movement particularly has done a lot of great work in the last 60 years or so addressing these issues and improving standards of practice around end of life care. When terminal patients were asked what scared them the most, surprisingly, many of them did not say death itself. They said pain, loss of independence and loss of dignity. These are all things that quality nursing care and cognizant medicine can help to regulate. In this area of healthcare the focus shifts completely from quantity of life to quality of life.

What is palliative care?

The journal of clinical oncology says “palliative care means meeting the physical, psychological, social and practical needs of patients and caregivers”. Palliative care is not necessarily end of life care, rather it focuses on the relief of suffering throughout a patient’s illness. Typically palliative care is offered to patients with cancer, particularly those with metastatic cancer and patients with a high symptom load (Chronic obstructive airway disorder, congestive heart failure etc.) although it can be beneficial for patients of any age and even for those who do not have a terminal diagnosis. The American College of Physicians identifies the key areas of focus for palliative care as pain, dyspnea (trouble breathing) and depression. They recommend practitioners regularly asses these areas for the dying person and put interventions in place to alleviate them. The interventions recommended include medications such as opiates, oxygen and psychosocial interventions such as cognitive behavioural therapy, education and individual and group support for depression. There is varying evidence for some of these interventions and many of them produce side effects which the dying person and their families may wish to avoid. Opiate medications are extremely effective at controlling pain and dyspnea. They can be administered orally, intravenously or under the skin. Having an awareness of potential side effects of these medications such as respiratory depression, drowsiness and constipation can help patients and families make informed decisions with regard to these medications. It also helps them to be proactive in terms of managing these side effects. Oxygen therapy though it is often recommended in the final stages of life when patients can become hypoxic (low oxygen) has also been shown to have mixed effectiveness in terms of maintaining quality of life. While in theory administering oxygen to a patient who’s oxygen is low makes sense, in the dying patient priorities are sometimes different. Oxygen is typically delivered to the patents via nasal prongs or a mask. It should be humidified to avoid drying out the patients nose and mouth. Even with humidification it can still have this drying effect. Regular oral care (every few hours) is one way to counteract this. For the dying patient who is at high risk of developing pressure sores the nasal prongs or mask and tubing can cause painful cuts on the face, neck and ears. Many patients and practitioners may weigh up the benefits versus the drawbacks and decide against this therapy for the dying person. It is also important to add to these interventions the importance of regular oral care for all dying patients during the final stages of their journey once they are no longer eating. If the dying person can no longer reposition themselves they should be assisted to do so every two hours. This helps to prevent painful pressure ulcers or “bedsores”. Naturopathic medicine has other tools to offer in addition to the intervention recommended by the American College of Physicians.These include nutritional support, counselling, acupuncture and relaxation techniques such as guided meditation.

Studies have shown that the involvement of palliative care earlier on in a patients illness can improve outcomes significantly for both patient and care givers. Improvement in quality of life, reduction in symptoms, reduced caregiver burden and also reduced costs to the health care system have all been demonstrated as positive outcomes with earlier referrals to palliative care.  Many patients are not referred to palliative care until quite late in their journey (less than three weeks prior to their death) and of course this limits the benefits they can gain from this service.

Importance of Communication

The shift of focus from quantity to quality is something healthcare practitioners and caregivers can sometimes struggle with. Health care practitioner’s instinct is to preserve and maintain life for as long as possible.The importance of advanced care planning is emphasized by much of the literature around palliative care and dying. In palliative and end of life care, treatment decisions are often group decisions and the input of caregivers and family is important. It is essential that relatives and health carers have open communications with the dying person and clearly understand their wishes when it comes to their own death. A “good death” may be different for each person. Understanding what a good death means to the dying person enables the healthcare team to navigate care in a way that finds the correct balance between quality and quantity for that individual. It is important to discuss what measures the dying person would like to be taken in terms of medical interventions like medication, intravenous therapy, surgery, ventilation, resuscitation.

Openness about a diagnosis and about death have increased in recent years in the medical model of end of life care. In the past, patients were often not told about their terminal diagnosis as families and doctors felt they were protecting them. This is a phenomenon known as “closed awareness”. Thankfully this is quickly changing as patients gain more autonomy around their care. One study which interviewed patients with brain tumours and their relatives identified some interesting facts around communication in these unique situations. In the interviews family members felt that they should protect the patient from bad news and they felt that the patient didn’t want to know. However when patients themselves were interviewed most of them expressed that they did indeed want information and even if it was bad news they wanted to know. Of course patients are individuals. The individuality of death and dying is the same as the individuality of life. No two people are the same in their approach. For some patients their interest in information was affected by their coping strategies. For instance, patients who were going to have certain types of treatment simply did not want to read anything negative about that treatment.

Death is something we can all be afraid of certainly. However, we shouldn’t be afraid to talk about it. Many studies identify that talking is helpful for the dying person and their relatives/caregivers. Meaningful communication surrounding death or a serious diagnosis was shown to help people identify the positive things about their situation. Many people identified their situation as a challenge and opportunity to grow. They said it taught them to prioritize their lives and do things like focus on family and themselves. Dying people or those facing a frightening diagnosis also said that they were able to find a strength within themselves that they never knew they possessed. Frank and open discussion regarding diagnosis and the practicalities of end of life care hands that control back to the dying person. This can be done at any stage of a person’s life. After all, none of us know what is around the corner for us. Thinking about our death not only helps us to prepare and potentially improve the quality of that death it also enriches our life.

“Of all mindfulness, and of all awareness, mindfulness of death and impermanence is the most important”- Buddha.

References

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. Annals of Internal Medicine January 2008.

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care. Thomas J. Smith, Sarah Temin, Erin R. Alesi, Amy P. Abernethy, Tracy A. Balboni, Ethan M. Basch, Betty R. Ferrell, Matt Loscalzo, Diane E. Meier, Judith A. Paice, Jeffrey M. Peppercorn, Mark Somerfield, Ellen Stovall and Jamie H. Von Roenn. Journal of Clinical Oncology. February 2012.

Communication and awareness about death: A study of a random sample of dying people. Social Science & Medicine, Volume 32, Issue 8, 1991, Pages 943-952

Pain and Palliative Care Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York, New York, USA. Accepted: April 13, 2006;

Cancer patients’ information needs and information seeking behaviour: in depth interview study. The BMJ. April 2000.

Death and dying in the intensive care unit. J.L. Epker. Erasmus MC:University of Rotterdam. September 2009.

The Attitudes of Cancer Patients and Their Families Toward the Disclosure of Terminal Illness. Young Ho Yun, Chang Geol Lee, Si-young Kim, Sang-wook Lee, Dae Seog Heo, Jun Suk Kim, Keun Seok Lee, Young Seon Hong, Jung Suk Lee and Chang Hoon You. Journal of Clinical Oncology. January 2004.