https://onlinelibrary.wiley.com/doi/full/10.5694/j.1326-5377.2010.tb03822.x
THE BOWTIE MODEL OF PALLIATIVE CARE
The ideology of early consultation
with palliative care is described
in the Bowtie Model of Palliative Care
by Dr. Pippa Hawley,
UBC Head of the Division of Palliative Care.
It visualizes how palliative care
and disease specialist care intersect.
In the beginning,
there is a larger involvement
of disease management care,
with some palliative care involvement.
However, as the disease progresses
towards end of life,
the disease specialist care diminishes
and the role of palliative care increases.
Palliative care is not about dying
— in fact,
it is about supporting people living
with a life–threatening illness
for as long as is needed.
This support involves
the management of
a person’s physical,
psychological,
emotional,
and spiritual suffering.
https://web.archive.org/web/20210127125325/https://med-fom-ubcmj.sites.olt.ubc.ca/files/2019/08/UBCMJ-Volume-11-Issue-1-8-9.pdf
MULTI-DIMENSIONALITY
Palliative care treats the patient as a whole, i.e. it is considerate of the physical, emotional, social and spiritual dimensions:
a) Physical dimension
All physical symptoms
are documented and treated systematically,
regularly and continuously.
For symptom control purposes,
valid measuring tools are used
for the continuous evaluation
of the progress.
The patient’s individual will and needs
are relevant for the interprofessional therapeutic plan.
The patient’s independence
should be promoted within the meaning
of “helping him to help himself”,
taking into account his or her resources.
b) Emotional dimension
The emotional stress factors
of the patient as well as
the attachment figures who
are caring for the patient
are systematically documented.
The patient’s coping resources,
i.e. his or her abilities and possibilities
to adequately process stressful events,
should be stabilised and supported.
Regular conversations with the patient
and his or her attachment figures
should be conducted to this end.
Psychological and/or psychotherapeutic interventions
and services should be addressed
at regular intervals,
and the continuity in care
and treatment should be guaranteed.
c) Social dimension
The social dimension puts the focus
on the patient’s lifeworld.
It is guided by the person’s needs,
familiar lifestyle and everyday routines.
The available resources
and self-reliance are strengthened,
allowing the patient to structure
his or her daily routine independently
until the end in spite
of illness-related limitations.
Among others,
attachment figures,
the circle of friends and acquaintances,
the living conditions,
financial and social insurance-related matters,
housekeeping, child minding, work, school
and leisure time are
of particular significance in this dimension.
Available local services
and the social network of helpers
are strengthened and networked.
Access to appropriate services
provided by various specialists
and the collaboration
with regional organisations
and groups of informal
and formal volunteer services
should be addressed at regular intervals,
and the continuity of the care
should be guaranteed.
Furthermore,
culture-specific aspects
should also be included within
the scope of treatment and care.
d) Spiritual dimension
Spiritual support
contributes towards improving
a person’s subjective quality of life
and the protection of their dignity
in the face of disease,
suffering and death.
It assists people in their existential,
spiritual and religious needs
during their search for the meaning,
interpretation and assurance of life
as well as their crisis management,
always while considering
the patient’s biography
as well as his or her personal values and beliefs.
The determination of the existential,
spiritual and religious needs
of everyone involved is required for this purpose.
Interventions and access
to adequate services relating
to spiritual counselling
should be discussed within the interprofessional team
at regular intervals,
and the continuity of the support
should be guaranteed.
Pain Relief - General points
☛ Set realistic goals, e.g. pain-free overnight; at rest; on movement.
☛ Give patients and carers information and instructions about their pain and pain management. Encourage them to take an active role in their pain management.
☛ Review pain control regularly.
☛ If using strong opioids, assess whether the pain is opioid responsive.
Weak Opioids
Codeine is converted to morphine. There is wide inter-individual variation in the production of morphine. Slow metabolisers produce little or no morphine, and obtain little or no pain relief from codeine. They would act as if they are opioid naive when converting to Step 3. Ultra-rapid metabolisers produce greater than usual amounts of morphine which can lead to opioid toxicity. Good Practice when titrating to a strong opioid would be to prescribe small initial doses of morphine as required to account for this possibility.
The palliative care plan may involve:
☛ Asking the resident about their preferred place of death;
☛ Commencing or revising an Advance Care Plan/Directive and a Not For Resuscitation (NFR) plan;
☛ Exploring the possibility of a person for substitute decision-making (for when and if the resident loses capacity to make and or communicate their own decisions);
☛ Reviewing medications with the General Practitioner (GP), including a review of non-essential medications; and,
☛ Arranging standing orders (anticipatory medications) to be put in place.
SPIKES Protocol for Delivering Bad News
SPIKES Protocol for Delivering Bad News
1. Setting
- ☛ Arrange for a private room or area. Have tissues available. Limit interruptions and silence electronics. Allow the patient to dress (if after examination). Maintain eye contact (defer charting). Include family or friends as patient desires.
- Example phrases: "Before we review the results, is there anyone else you would like to be here?” “Would it be okay if I sat on the edge of your bed?”
- ☛ Use open-ended questions to determine the patient's understanding. Correct misinformation and misunderstandings. Identify wishful thinking, unrealistic expectations, and denial.
- Example phrases: "When you felt the lump in your breast, what was your first thought?” “What is your understanding of your test results thus far?”
- ☛ Determine how much information and detail a patient desires. Ask permission to give results so that the patient can control the conversation. If the patient declines, offer to meet him or her again in the future when he or she is ready (or when family is available)
- Example phrases: "Would it be okay if I give you those test results now?” “Are you someone who likes to know all of the details, or would you prefer that I focus on the most important result?”
- ☛ Briefly summarize events leading up to this point. Provide a warning statement to help lessen the shock and facilitate understanding, although some studies suggest that not all patients prefer to receive a warning. Use nonmedical terms and avoid jargon. Stop often to confirm understanding.
- Example phrases: "Before I get to the results, I'd like to summarize so that we are all on the same page.” “Unfortunately, the test results are worse than we initially hoped.” “I know this is a lot of information; what questions do you have so far?”
- ☛ Stop and address emotions as they arise. Use empathic statements to recognize the patient's emotion. Validate responses to help the patient realize his or her feelings are important. Ask exploratory questions to help understand when the emotions are not clear.
- Example phrases: "I can see this is not the news you were expecting.” “Yes, I can understand why you felt that way.” “Could you tell me more about what concerns you?”
- ☛ Summarize the news to facilitate understanding. Set a plan for follow-up (referrals, further tests, treatment options). Offer a means of contact if additional questions arise. Avoid saying, “There is nothing more we can do for you.” Even if the prognosis is poor, determine and support the patient's goals (e.g., symptom control, social support).
- Example phrases: "I know this is all very frightening news, and I'm sure you will think of many more questions. When you do, write them down and we can review them when we meet again.” “Even though we cannot cure your cancer, we can provide medications to control your pain and lessen your discomfort.”
https://www.aafp.org/afp/2018/0715/p99.pdf
• Rapid progression of disease
• Progressive decline in Palliative Performance Score (PPS)
• Weight loss not due to reversible causes and/or declining serum albumin levels
• Dependence on assistance for two or more ADLs: feeding, ambulation, continence, transfer, bathing or dressing
2. Dysphagia leading to inadequate nutritional intake or recurrent aspiration
3. Decline in systolic blood pressure to below 90 systolic or progressive postural hypotension
4. Increasing ER visits, hospitalizations or physician follow-up
5. Multiple progressive Stage 3 or Stage 4 pressure ulcers in spite of optimal care
6. Frequent falls or increasing problems with balance and weakness
7. Increased lethargy/sleepiness
8. Uncontrolled pain, shortness of breath, nausea/vomiting, anxiety
9. Multiple, recurrent infections
10. Patient appears to be “giving up” physically and emotionally
The corticosteroid of choice within palliative care is Dexamethasone but Prednisolone is used at times. Below is a table of approximate anti-inflammatory equivalencies of several corticosteroids.
Dexamethasone has several advantages for patients with malignancy
• Lower sodium retention potency and hence reduced likelihood of fluid retention
• Ability to administer larger dose with small number of tablets.
• Tablets dispersed in small volumes of water.
• Available as subcutaneous injection.
SIDE EFFECTS
• Doses >4mg od are likely to lead to significant side effects after several weeks.
• Doses <4mg od are often tolerated in patients with a prognosis of months.
Pharmacotherapy is only one component of end-of-life care. Quality palliative care is delivered by a team of caregivers and focuses on careful individualization of holistic care based on patient and family goals. The evidence base supporting interventions at the end of life is limited, but growing.
https://web.archive.org/web/20200823124032/https://www.aafp.org/afp/2009/0615/afp20090615p1059.pdf
END OF LIFE MEDICINES
To ensure common symptoms in the terminal phase eg pain, secretions and agitation are anticipated and can be managed using anticipatory drugs
Consider:
☛ which medicines can be stopped
☛ which need to be continued or replaced (established analgesics, anti-emetics, anticonvulsants) for ongoing symptom control possibly by continuous subcutaneous infusion (CSCI) in a syringe driver
☛ many tablets can be prescribed as oral liquids
☛ what drugs need to be made available as PRN (as needed) medicines: prescribe and give all injections by subcutaneous route (SC)
5 common medications used in end of life care:
ANALGESIC: provides background and breakthrough (as needed) analgesia
ANTI EMETIC: continue existing anti-emetic if effective
ANTISECRETORY: provide as needed and start CSCI as soon as any rattle starts
RELAXANT / SEDATIVE: for agitation
ANTICONVULSANT: Midazolam 20 - 30mg/24hours by CSCI is usually sufficient to manage seizures which have required anticonvulsants
Do-not-resuscitate, do-not-intubate, and do-not-hospitalize orders
Simply, these orders are to withhold cardiopulmonary resuscitation or intubation and do not extend further than these 2 concepts. All other care would be continued as is standard of care unless further delineated by any advance directive the patient might have.
A do-not-hospitalize order is another type of advance directive that is relevant for some nursing home residents who are impaired in their ability to communicate. This order specifies that, in the case of an acute medical crisis, the resident should not be transferred to a hospital for care.
Guidelines for hospice eligibility are as follows:
• Patient has a confirmed diagnosis of a terminal disease with a prognosis of six months or less.
• Physician and patient have determined that curative therapy is no longer available or desired.
• Patient and family desire comfort and care along with symptom management.
View our hospice eligibility guidelines here.
https://www.carrollhospice.org/eligibility
GUIDANCE FOR THE MANAGEMENT OF SYMPTOMS IN ADULTS IN THE LAST DAYS OF LIFE
- Please note that these recommendations should only be used for patients in the last days of life and should not be used outside this context.
When prescribing drugs, always start with the lowest dose in the range specified in this guide.
If symptoms persist contact the Specialist Palliative Care Team in your area.
Care for Adults With a Progressive, Life-Limiting Illness
- Examples of validated tools used for assessment may include the Edmonton Symptom Assessment System, and the Palliative Performance Scale. The comprehensive and holistic assessment considers a person’s socio-cultural context, and initial assessments should include inquiry about a person’s mother tongue and language of preference.
- Palliative care support consists of health advice, resources, treatment, and other assistance provided by the health care team to meet a person’s palliative care needs. Support should be culturally relevant and it can come in many forms, including a telephone call with a registered nurse; a number to call when pain or other symptoms are not well managed; or a home visit from a primary care or palliative care provider.
SPIRITUAL CARE AND RELIGIOUS CARE
- ☛ Spiritual care and religious care are different and very individual although the differences are not always clearly understood.
- ☛ They should neither be artificially separated nor assumed to be interchangeable.
- ☛ Spiritual care is not necessarily religious but religious care at its best should always be spiritual.
- ☛ The diagnosis of life threatening illness has a profound effect on people and on their family and friends.
- ☛ It often provokes questions relating to identity and self worth as patients seek to find an ultimate meaning to their lives.
Religion:
refers to beliefs, practices and traditions
associated with religious groups
(e.g. Islam, Catholic, Protestant, Jewish, Buddhist).
Spirituality:
refers to the personal search
for meaning and purpose in life
(relationship to self, others, nature, world, God).
Spiritual Care:
Spiritual care is defined as
“meeting people where they are
and assisting them with connecting
or reconnecting with things,
practices,
ideas,
and principles
that are
at the core of their being
-the breath of their life,
making a connection between yourself and that person“.
https://web.archive.org/web/20161222053913/http://www.nynj.va.gov/nynj/docs/Module24.pdf
SPIRITUAL DISTRESS
Spiritual distress is a disruption in one’s beliefs or value system. It affects a person’s entire being. It shakes the basic beliefs of one’s life
What are the Signs and Symptoms of Spiritual Distress?
• Questions the meaning of life
• Afraid to fall asleep at night or other fears
• Anger at God/higher power
• Questions own belief system
• Feels a sense of emptiness; loss of direction
• Talks about feelings of being left by God/higher power
• Seeking spiritual help
• Questions the meaning of suffering
• Pain and other physical symptoms can be expressions of spiritual distress as well
Connecting with Your Spiritual and Religious Beliefs
Spiritual or religious beliefs may help people during illness. Spirituality and religion may:
• Help reduce depression and anxiety
• Reduce feelings of isolation or loneliness
• Help cope with the effects of the illness and treatment
• Increase the ability to enjoy and appreciate life
• Find meaning in the most difficult situations
• Improve health
Some people will “reconnect” with their beliefs. Others may find new beliefs. This can be done through getting back in touch with the things that gave you the strength to cope with the more difficult challenges throughout your life.
For some, it is through organized religious groups. If this is the case, talk with your clergy or religious leader.
Some people benefit from surrounding themselves with family, pets, and the beauty of nature, music, art, or dance. Some find comfort in support groups. Others prefer the assistance of a counselor.
Talk to your doctor. Your health care team can offer resources and suggestions.
SPICT™ is a clinical tool used by health and care professionals in many countries to help them identify people whose health is deteriorating due to one or more advanced, progressive conditions or a new life-threatening illness.
SPICT™ is a useful guide for clinicians, to:
☛ prompt consistent recognition of patients who are at risk of dying within 12 months.
☛ trigger a review of patients with advanced conditions, multiple comorbidities or general frailty, especially if they have had multiple hospital admissions
☛ trigger a conversation with patients and their families about goals of care, their priorities and values at this time of life, and to assess and plan supportive and palliative care needs
☛ identify patients for whom decisions about the treatment of an acute illness with limited reversibility are required, and whose medical treatments might be limited to ‘ward measures’
☛ identify patients for whom a cardiopulmonary resuscitation (CPR) attempt would not be beneficial, and who require a Resuscitation Plan- 7 Step Pathway
☛ identify patients who have complex needs and require extra supports in the community, including specialist palliative care assessment.
SPICT™ criteria are met when there are at least two indicators of deteriorating health and at least one indicator of an advanced condition.
https://www.spict.org.uk/using-spict/
