A guide for people with a life-limiting illness, their family and friends
helping you to live until you die
CONTENTS
Introduction
3
What does having a life-limiting illness mean for me?
4
How can an occupational therapist help?
7
Interventions: Helping you to continue to live as your disease progresses
12
Treating your symptoms
13
Enhancing you environmental supports
15
Helping you to continue to participate in life
20
Conclusion
23
Further information and resources
24
References
26
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HELPING YOU TO LIVE UNTIL YOU DIE A guide for people with a life-limiting illness, their family and friends Introduction Receiving the news that you or a loved one has been diagnosed with a life-limiting illness can cause feelings of fear, anger, shock, and helplessness. It can change the way you view your future and make you reassess who and what is important to you as you adapt to the new reality. This ebook has been developed to help you understand how a Palliative Care Occupational Therapist can assist if you, or when someone you love, is diagnosed with a life-limiting illness. It will provide you with helpful resources, readings, and links to help you find an occupational therapist if you haven’t already been referred to one. What Is Occupational Therapy? Occupational therapy is a person-centred health profession, promoting health and well-being through every-day activities. In palliative care, occupational therapists help to optimise what people can do. They promote dignity and quality of life, and support continued participation in the things we value most.
The term ‘palliative care’ often evokes feelings of dread and distress. It is commonly misunderstood, with most people believing that they are going to die immediately when they hear it. However this is not typically the case, as some people can live up to a year or more after their diagnosis. Palliative Care The World Health Organization defines palliative care as an approach to care that enhances the quality of life. Palliative care can help a person with a life-limiting illness (and their family) to live life as fully and comfortably as possible1. This type of care can be delivered to people of all ages who have a life-limiting illness and aims to provide symptom relief, as well as practical, emotional, and spiritual support. Life-limiting Illnesses A palliative (or life-limiting) illness is an illness where there is no prospect of cure, and the person is expected to die within the next year due to their advanced and active disease, or the ageing process2. People with life-limiting illnesses may have diagnoses such as cancer, multiple sclerosis, motor neurone disease, advanced dementia, or end-stage heart, lung or kidney disease, as well as any other diagnosis that limits life expectancy. People with life-limiting illnesses often describe a variety of physical symptoms which impact their ability to complete their activities of daily living3. These symptoms may be due to their illness or disease progression, or their treatment. Common physical symptoms include4,5: Fatigue Breathlessness Pain Poor mobility Nausea and vomiting Changes to appetite and taste Weight changes A life-limiting illness can be stressful for both you and your loved ones as you begin to process the diagnosis and your future. Most people will experience some form of grief reaction to their diagnosis, as well as feelings of anxiety and depression. Psychological symptoms may present as5: Feelings of helplessness An inability to cope, even with seemingly simple things Difficulty accepting help Feelings of meaninglessness Poor concentration or memory Additionally, receiving a life-limiting diagnosis can alter your outlook on life. It can result in you searching for meaning in life, or challenging your thoughts on spirituality.6 Terminal and End-of-Life Care As you or your loved one’s illness progresses, you might hear the terms ‘terminal’ or ‘end-of-life’ used. While the terms are often used interchangeably with ‘palliative’, they are more commonly used by health professionals to describe care that is provided when the person is showing signs of actively dying, or when life is expected to be limited to a short number of days or hours.7 Palliative Care Services Palliative care services are made up of a multi-disciplinary team including a mix of general practitioners, specialist doctors, nurses, allied health professionals, and chaplains2. These health professionals typically provide care to the person and their family or carers in places such as homes, hospitals, hospices, and residential aged care facilities. The place of care is often determined by the person’s preference, their care needs, and the supports they have available to them.
Occupational therapists work from the philosophy that people want to participate in the things that are meaningful to them regardless of their illness or disability. Your occupational therapist will complete assessments, set goals, and provide interventions for you (and your carer) to help you continue living until you die8. Assessment: Identifying Your Needs Generally, the first time you meet your occupational therapist they will complete an initial assessment. This is used to find out more about you and to identify whether you are experiencing any problems completing your daily activities9,10. They will ask questions about who you live with, how you spend your day, and whether you receive any assistance to complete your daily activities, as well as identifying what is important for you to continue doing. The questions asked by your occupational therapist are designed to see what activities are causing you the most difficulty and whether you have had to change or modify what you do as your illness has progressed. Depending on what they find, your occupational therapist may complete other assessments to identify your physical, emotional, social and spiritual needs. These assessments may be completed by asking you or your loved one a set of questions, or by watching you complete an activity. Your occupational therapist may watch you complete daily activities such as showering, dressing, toileting, getting in and out of bed or a chair, or making something to eat and drink in the kitchen, to determine if any modifications, equipment, or assistance may help to support your participation. They may also determine if you have any skin care or comfort needs, issues with sleeping, or whether you are feeling stressed or fatigued. Additionally, they may want to see your home environment. During this assessment, your occupational therapist will determine how you move around your home and will work with you to determine how to make your home environment suitable for you as your needs change as your illness progresses.
THINGS TO THINK ABOUT BEFORE I SEE MY OCCUPATIONAL THERAPIST I am currently having difficulties completing the following activities:
ACTIVITY
YES/NO
Eating
Toileting
Showering
Grooming
Moving around my home
Getting in or out of bed
Getting on or off a chair
Completing spiritual activities e.g. praying, meditating, attending church
Sleeping
Cleaning
Laundry
Accessing the community
Getting in or out of the car
Shopping
Seeing friends or family
Gardening
Leisure activities e.g. reading, listening to music, doing arts and crafts, working in the shed
Other -
Goal setting is an important part of occupational therapy practice. Goals should be set in conjunction with the occupational therapist, and focus on supporting you to continue living well until you die10. Your goals should help clarify what you want to achieve and how you would like to spend your remaining time11. Your goals will help to direct your therapy, and are typically set around: Modifying the way you participate in your daily activities Making practical preparations for death Finding acceptance and closure with your diagnosis Assisting your loved ones to care for you Identifying where you would like to die
goal setting: determining what you want
Before I die I would like to: ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________
things to think about before i see my occupational therapist
Interventions: Helping you to continue to live as your disease progresses Occupational therapy interventions focus on treating your symptoms (physical, emotional and spiritual), providing environmental supports and equipment, and keeping you engaged in the things that are meaningful to you10. These interventions may occur in your home, or within a hospital, hospice or community setting, with or without a family member or carer present.
treating your symptoms Your occupational therapist can help you to lessen the impact of some of the symptoms caused by your life-limiting illness8. Some symptoms they can assist with include: Breathlessness: By providing you with education on stress and anxiety management, coping strategies, positioning, and energy conservation techniques, your occupational therapist can lessen the impact of your breathlessness12 Fatigue: Your occupational therapist can provide you with education and strategies to conserve your energy levels such as how to prioritise tasks and pace your activities, how to build rest breaks into your day, and suggest assistive equipment to lessen the amount of energy needed to complete a task10,13,14 Stress and anxiety: Your occupational therapist can teach you mindfulness practices and take you through guided and unguided imagery, and progressive muscle relaxation to help you relax15. They can encourage you to talk with your family about your feelings and anxieties, and outline your wishes in relation to your death10 Sleeplessness: Your occupational therapist can examine your sleep routine to educate you on good sleep behaviours, change the environments you sleep in, or introduce new sleep routines to improve your sleeping habits16 treating your symptoms Pain: Occupational therapists can help minimise pain levels through: therapeutic exercises and positioning10, the use of pressure care equipment, hot and cold packs, guided imagery, and progressive muscle relaxation17 Memory, attention, and information processing: Your occupational therapist can help to reduce the impact of cognitive symptoms by applying different strategies designed to compensate for your loss, or to retrain your memory and attention15 Lymphoedema and oedema management: Lymphoedema management can be carried out by occupational therapists who have completed further specialised training. Treatment typically involves a combination of skin care, bandaging or compression garments, and massage, aiming to reduce the size of the swollen body part18 Skin care and comfort: Your occupational therapist can determine if you need any form of pressure care mattress or cushion to help reduce or prevent a pressure sore or to make resting more comfortable19
Enhancing your environmental supports
As you become more unwell and less able to do the things that matter to you, your occupational therapist may suggest making some changes to your environment20. When your occupational therapist talks about the environment, they are referring to the place where you live and spend time, the social supports that can help you, and the services that you can access. The environment you live in can make an enormous difference to how, and where, you can be cared for as your illness progresses.
Modifying Your Home Environment Most commonly, your occupational therapist will want to assess your home environment8. They do this to see what daily activities you can do, and what problems you may have in completing those activities. For example, you may be having difficulty getting in or out of the shower or finding that you become breathless when in the shower. Your occupational therapist will work with you to identify the best ways that you can modify or change your home environment to allow you to maintain your independence for as long as possible. Minor home modifications may also be recommended. These can include rails in the shower recess or next to the toilet to enable you to access these facilities more independently, or prescribed equipment such as a wheelchair to enable you to continue accessing the community. Your occupational therapist may also suggest changing what each room in the home is used for. For example, they may suggest moving a hospital bed into your lounge room to allow you to participate in family activities, meal times, and social events, yet still allowing you to rest.
Modifying Your Activities To make it easier for you to manage in your home, your occupational therapist may also suggest changes to your daily routines20. For example, if you become easily fatigued they may help to rearrange your activities so that you are doing the most important things first, or suggest you build rest breaks into your day so that you can still read bedtime stories to your children at night. Occupational therapists will also consider ways to simplify the activities that are meaningful to you so that you can continue to participate, regardless of how much you are able to do. For instance, they may recommend you use a wheelchair when you are out in the community to provide you with more energy to socialise or shop.
Implementing Supports Your occupational therapist may recommend that you begin to receive assistance from a family member or paid service when completing some of your daily activities. In palliative care, the person who provides care for you is considered a very valuable member of your care team. As your illness progresses your occupational therapist will begin to work more closely with your carer to help you to continue participating in your daily activities. Occupational therapists work with carers in many ways. Most commonly, they educate carers on different manual handling techniques to reduce their risk of injury when helping you to transfer in and out of bed, on and off chairs, or in and out of cars. Occupational therapists may also educate carers on how different types of equipment—such as hoists, hospital beds, and wheelchairs—can enable them to transfer or move you without injuring themselves or you. Additionally, the occupational therapist can provide support to the carer, as well as resources to help reduce the risk of carer burnout.
In palliative care, the person who provides care for you is considered a very valuable member of your care team.
Who will be able to help support and care for me? ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________
When you are first diagnosed, your occupational therapist will help to focus on living and maintaining a sense of normality10,21. They may help to work out what is most important to you and help you to reprioritise the things that matter most to you. This could be spending time with family or friends, taking the kids to school, being able to go to the beach, participating in leisure activities, or attending religious practices and special events. As your illness progresses, you may experience changes in your ability to complete certain activities. Your occupational therapist can help you remain engaged in meaningful activities by breaking the activity down into smaller, more manageable parts you can complete22-24. For example, you may enjoy cooking, but are unable to prepare a whole meal. Your occupational therapist will help you to focus on what you can do. You may instead make the side dishes, choose the menu, or write the shopping list, while someone else helps to prepare the main meal. Alternatively, your occupational therapist may recommend the use of services to help you with your showering or cleaning, so that you can focus on having the energy to do the things you really want to do. As death becomes closer, your occupational therapist may get you to shift your attention on ways that you can better prepare for death10. This may involve making practical preparations such as organising your financial and legal affairs by writing your Will or Advanced Care Directive, or thinking about your funeral preparations. For others, it may involve cleaning out their houses and sorting through their belongings, teaching their families about the roles and routines that they completed, or getting to complete an activity one last time. Your occupational therapist can also help you to reflect on what you have achieved in your life by helping you to complete a life review10. They can help you to complete creative therapies23,25, such as writing your autobiography, scrapbooking, making collages or gifts, leaving family recipes, and writing cards and letters or creating videos for family and friends. Through these creative therapies, you can reflect on your life, leave a legacy, and say goodbye to those you love10.
"Through these creative therapies, you can reflect on your life, leave a legacy, and say goodbye to those you love10."
Things I would like to be doing but can't anymore? ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________ ______________________________________________________
While being diagnosed with a life-limiting illness and being referred to palliative care services can seem daunting, your occupational therapist is here to help you and your carer. When guided by trained occupational therapists, you can continue to participate in the things you value most. Through tailored interventions—such as modified activities, environmental changes and support services—you can reduce the impact of your symptoms and continue living until you die.
"When guided by trained occupational therapists, you can continue to participate in the things you value most."
Helpful Websites The following websites have useful information to help you learn more about palliative care and caring for someone with a life-limiting illness. CareSearch CareSearch has been designed to provide free and easy access to reliable information about death and dying. This website contains a mix of information sheets and education videos for you and your family to read and watch. Palliative Care Australia Palliative Care Australia is the national peak body for palliative care in Australia. This website contains written information and videos explaining palliative care, patient stories, and providing education as to what supports and services are available for people with life-limiting illnesses. Cancer Council The Cancer Council website provides information for people with cancer and their families. You can follow their blog or read and watch cancer-related resources on their website. Additionally, each state has a state-based website, which provides information on local supports. Dementia Australia Dementia Australia represents people with dementia and their carers. This website provides information, support, and educational resources on dementia. MND Australia The MND Australia is for people with motor neurone disease and their family and friends. This website contains multiple fact sheets, as well as links to state-based websites with further information on motor neurone disease and government supports, how to get involved, and ways to access equipment at a local level. MS Australia MS Australia is the national voice for people with multiple sclerosis. This website helps you to learn more about multiple sclerosis and has a blog and calendar of events. There are also state-based websites which offer further information on multiple sclerosis, accessing NDIS services and other supports, as well as information on how to live well. Where Can I Find An OT? Most palliative care occupational therapists work in a hospital or hospice setting. You can be referred to an occupational therapist through your treating health professionals. However, if you do not have access to an occupational therapist through your current healthcare setting, you can find one through the Occupational Therapy Australia website.
references
1 World Health Organization. WHO Definition of Palliative Care, <http://www.who.int/cancer/palliative/en/> (2018). 2 Palliative Care Australia. What is palliative care?, <http://palliativecare.org.au/> (2018). 3 Cottrell, L. & Duggleby, W. The “good death”: An integrative literature review. Palliative and Supportive Care 14, 686-712, doi:10.1017/S1478951515001285 (2016). 4 Ashby, M. in The study of dying: From autonomy to transformation (ed A. Kellehear) 76-98 (Cambridge University Press., 2009). 5 Georges, J., Onwuteaka-Philipsen, B., van der Heide, A., van der Wal, G. & van der Maas, P. Symptoms, treatment and “dying peacefully” in terminally ill cancer patients: a prospective study. Supportive care in cancer 13, 160-168 (2005). 6 Rahman, H. Journey of providing care in hospice: Perspectives of occupational therapists. Qualitative Health Research 10, 806-818, doi:10.1177/104973200129118831 (2000). 7 Palliative Care Programme Working Group. Glossary of terms., <http://www.hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/glossary.pdf> (2012). 8 Occupational Therapy Australia. Postion paper: Occupational therapy in palliative care, <http://www.otaus.com.au/sitebuilder/advocacy/knowledge/asset/files/21/ positionpaper-occupationaltherapyinpalliativecare%5Baugust2015%5D -occupationaltherapyaustralia.pdf> (2015). 9 Pizzi, M. A. Promoting health and wellness in end-of-life care. Gerontology Special Interest Section Quarterly / American Occupational Therapy Association 33, 1-4 (2010). 10 Hammill, K. The professional reasoning of Australian occupational therapists working with people living with a terminal illness (Unpublished Thesis. University of Western Sydney. Campbelltown, NSW, 2014). 11 CareSearch. Adapting Goals, <https://www.caresearch.com.au/caresearch/tabid/2756/Default.aspx> (2017). 12 Morgan, D. D. & White, K. M. Occupational therapy interventions for breathlessness at the end of life. Current Opinion in Supportive and Palliative Care 6, 138-143, doi:10.1097/SPC.0b013e3283537d0e (2012). 13 Purcell, A., Fleming, J., Bennett, S. & Haines, T. Development of an educational intervention for cancer-related fatigue. The British Journal of Occupational Therapy 73, 327-333 (2010). 14 Purcell, A., Fleming, J., Haines, T. & Bennett, S. Cancer-related fatigue: A review and a conceptual framework to guide therapists' understanding. The British Journal of Occupational Therapy 72, 79-86 (2009). 15 Pergolotti, M., Williams, G. R., Campbell, C., Munoz, L. A., & Muss, H. B. . Occupational therapy for adults with cancer: Why it matters. The Oncologist 21, 314–319, doi: 10.1634/theoncologist.2015-0335 (2016). 16 Leland, N. E., Marcione, N., Niemiec, S. L. S. & Don Fogelberg, K. K. What is occupational therapy’s role in addressing sleep problems among older adults? OTJR : occupation, participation and health 34, 141-149, doi:10.3928/15394492-20140513-01 (2014). 17 Satija, A. & Bhatnagar, S. Complementary therapies for symptom management in cancer patients. Indian Journal of Palliative Care 23, doi:http://dx.doi.org/10.4103/IJPC.IJPC_100_17 (2017). 18 Silver, J. K. & Gilchrist, L. S. Cancer rehabilitation with a focus on evidence-based outpatient physical and occupational therapy interventions. American Journal of Physical Medicine & Rehabilitation 90, S5-S15 (2011). 19 Evers, S., Anderson, K. & Pagel, L. Occupational therapy's role in pressure care. OT Practice 20, 13-15 (2015). 20 Hammill, K., Bye, R. & Cook, C. Occupational therapy for people living with a life-limiting illness: A thematic review. The British Journal of Occupational Therapy 77, 582-589 (2014). 21 Bye, R. A. When clients are dying: Occupational therapists' perspectives. Occupational Therapy Journal of Research 18, 3-24 (1998). 22 Lyons, M., Orozovic, N., Davis, J. & Newman, J. Doing-being-becoming: Occupational experiences of persons with life-threatening illnesses. The American Journal of Occupational Therapy 56, 285-295 (2002). 23 la Cour, K., Johannessen, H. & Josephsson, S. Activity and meaning making in the everyday lives of people with advanced cancer. Palliative and Supportive Care 7, 469-479 (2009). 24 la Cour, K., Josephsson, S. & Luborsky, M. Creating connections to life during life-threatening illness: Creative activity experienced by elderly people and occupational therapists. Scandinavian Journal of Occupational Therapy 12, 98-109, doi:doi:10.1080/11038120510030889 (2005). 25 la Cour, K., Josephsson, S., Tishelman, C. & Nygard, L. Experiences of engagement in creative activity at a palliative care facility. Palliative & Supportive Care 5, 241-250, doi:doi:10.1017/S1478951507000405 (2007).
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Disclaimer: This ebook provides general information only. The content provided in this ebook, and in any linked materials, are not intended and should not be construed as direct medical advice. If the reader or any other person has a medical concern, they should consult with an appropriately registered health professional.
Acknowledgements
Occupational Therapy Australia would like to thank the author of this resource for their valuable contribution. Author: Kathrine Hammill | BAppScHons (Occupational Therapy), PhD Lecturer in Occupational Therapy |School of Science & Health | Western Sydney University Images sourced from pexels, unsplash & shutterstock
Occupational Therapy Australia 2018 All copyright and publication enquiries should be directed to marketing@otaus.com.au
Occupational Therapy Australia (OTA) is the national professional association for occupational therapists in Australia. Our members are occupational therapists, students and those working in the profession in a variety of practice areas, to enable people to participate in meaningful activities.
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