In End of Life Care

Maria Fidelis Manalo, MD, MSc.

Palliative Care

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

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 ).

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

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.

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 )

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.

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.

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.

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.

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.

Social Support

Social support was identified as a crucial resource to support self care behaviourfor 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.

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.

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.

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.

“You matter because you are you, and you matter all the days of your life”.

- Dame Cicely Saunders

Is dying well as important as living well?

Session 562: Rethinking Care Toward the End of Life

December 14-19, 2016, Salzburg Austria

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.

SAVE THE DATE