This document discusses self-care in end-of-life care. It defines self-care as maintaining one's usual practices to deal with problems independently. Exploring self-care empowers patients to learn about their condition and identify support needs. Benefits of self-care for cancer patients include improved health, reduced symptoms, and feeling in control. However, psychological distress and caregiver strain can prevent self-care. Key self-care strategies discussed are maintaining normality, preparing for death, managing physical symptoms, accepting the illness, and relying on social support from family and other patients. The document emphasizes empowering patients through self-care.

1. In End of Life Care
Maria Fidelis Manalo, MD, MSc.
Palliative Care

2. Definition
 Often used interchangeably with other terms
such as self-management, self-help, self-
monitoring and self-efficacy
 ‘Maintaining ones usual practices of self-care—
those things that are important and unique to
oneself in maintaining one’s sense of self…
being given the means to master or deal with
problems, rather than relinquish them to
others’
 Emphasizes the patient ‘being in control’ and
‘maintaining independence’, which are
important in the end of life care

3. Why explore self care in end of life
care
 Living with a condition, such as advanced
cancer, for which there is no cure can
have a devastating effect on a person.
 The impact can extend to psychological,
social, physical, economic and cultural
aspects of peoples’ lives (Lin and Buer-
Wu, 2003 ; Zabalegui, 1999 ).

4.  People tend to cope as well as they can, with
the support they have, but frequently do not
have all the information, or skills, to make
well informed decisions, or the appropriate
response (Leydon et al., 2000 ).
 Supported self care in end of life care can
empower people to learn about their
condition, acknowledge the impact on their
life, and enable them, where possible, to face
the range of challenges they may have, and
identify areas where they need support.
Why explore self care in end of life
care

5. Self-care in cancer
 An important concept as documented evidence demonstrates
the efficacy and efficiency of the self-care approach in
controlling symptoms.
 Benefits of self-management-focused symptom control include
the following:
◦ improved health status
◦ reduced hospital admission
◦ improved information
◦ reduced pain and symptom distress
◦ feeling in control over pain
◦ being more prepared for end of life, such as writing a living will
 In addition, improved information enables patients to
communicate more effectively with health-care professionals.

6. Factors that prevent patients to self care
 One study on pain management found
that even when patients are willing to
care for themselves, they may struggle
with the complexity of the regimens
prescribed.
 Other hindrances include:
◦ psychological distress, anxiety and a feeling of
hopelessness (Porter et al., 2002;Zabalegui,
1999)
◦ high care giver strain (Porter et al., 2002 )

7. Maintaining Normality
 A key finding was that people approaching
the end of life considered maintaining
normality as the most important issue for
them.
◦ It was important to people that they were
viewed normally and not as an illness, both in
terms of how they are treated by others and
in terms of how they manage their lives.

8. Preparing for Death
 Patients recounted that they were prepared
for and ready for their death without loss of
hope or the desire to keep living.
◦ Although this may seem paradoxical, it does
capture the uniqueness of knowing how ill the
patients are, still maintaining normality, but also
being realistic about the future.
 It was clearly important for patients to be
able to prepare for their death, either by
sorting out affairs, planning their funeral or
discussing what to expect.

9. Self-care strategies/physical
 It was important for patients to maintain their
own activities of daily living, if possible.
◦ This made them feel more worthwhile, less of a
burden and also helped maintain their normality.
◦ Patients who had lost the ability to carry out daily
activities, perceived themselves both as getting worse
and more of a ‘burden’ to their family.
◦ Sometimes a patient had had adaptations to the house
or used aids that they had bought themselves (such as
special cutlery, shower and bath aids) to help them
manage. It was important to patients that when
possible, they were able to wash, dress, shop and cook
for themselves.

10. Self-care strategies/physical
 Moreover, people often found their own ways
of managing distressing symptoms which they
used in combination with conventional
medicine.
 Distraction and relaxation were the most
helpful techniques used to manage symptoms.
 However, the most common way that patients
managed ‘overwhelming tiredness’ (as they
described it) was to limit activities.

11. Self-care strategies/emotional
 Many patients stated that when they reached
acceptance, they were able to cope better and
manage their illness more effectively.
 They also said that they remain optimistic with the
help of their family members.
 Often patients oscillated between talking about their
impending death and their hopes and dreams for the
future.
 The right to exercise choice and control, even when
extremely ill, was important to all the patients.
 Moreover, they often related this to preserving their
dignity as well as maintaining their normality.

12. Social Support
 Social support was identified as a crucial
resource to support self care behaviour
for several patients (Gray et al.,
1998;Zabalegui, 1999 ), with patients
arguing that family were the sole reason
for surviving, and enduring the challenges
of living with end stage disease.
 If patients needed physical or emotional
support, this was predominately provided
by family and friends.

13. Support from Others with Cancer
 Patients, mainly those attending hospice day care,
stated how much gaining support from others with
cancer helped them manage emotionally with their
illness.
 Sometimes they felt that talking to others with the
illness provides more support than talking to family
members or health professionals.

14. Support from Health Care
Professionals
 Several family members stated that they felt
unsupported by health care providers,
particularly in terms of a lack of information
and what to expect should the patient
deteriorate.
◦ Health professionals rarely spoke to families
about what to expect when the person is dying,
often for fear of worrying or frightening family
members, yet family members and friends stated
that they would have preferred to know what to
expect no matter how bad, and that not knowing
was worse than knowing.

15. Relevance to Clinical Practice
 Self care strategies for people with
advanced disease should be related to
helping them cope with pain and
debilitating symptoms, coping emotionally
and adjusting psychosocially to their
illness, and alleviating distress associated
with symptoms that can not easily be
improved.

16. “You matter because you are you, and you
matter all the days of your life”.
- Dame Cicely Saunders

17. Is dying well as important as living well?
Session 562: Rethinking CareToward the End of Life
December 14-19, 2016, Salzburg Austria

18. References
 Johnston, BM, Milligan, S., Foster, C. et al. Self-care and end
of life care—patients’ and carers’ experience a qualitative
study utilizing serial triangulated interviews Support Care
Cancer (2012) 20: 1619.
 Johnston, BM, McGill, M, Milligan S., McElroy D, Foster
C, Kearney N. Self care and end of life care in advanced
cancer: literature review. European Journal of Oncology
Nursing (2009 Dec);13(5):386-98.

19. SAVE THE DATE