Serious or chronic illnesses such as cancer, heart disease, and Alzheimer’s can impact an individual’s quality of life, as well as that of their loved ones. The physical symptoms and mental stress can sometimes be too much to handle.
Palliative care ensures that individuals including older adults facing life-limiting illnesses get relief from symptoms and receive emotional, mental, and spiritual support to improve their overall wellbeing. Not just them, but their caregivers and family members as well.
Unlike hospice, palliative care doesn’t have national guidelines regulating care, however, principles put together by recognized bodies help to form guidelines.
In this article, we explore these palliative care principles, and how they guide the quality of care, ensuring patients facing chronic conditions receive excellent care.
Why Palliative Care?
When a loved one is diagnosed with a serious illness, a lot of things begin to happen. Their condition can either respond positively to treatment, get better, get worse, or get terminal.
Their quality of life begins to be affected. Loved ones and family members are not left out. The mental, emotional, and financial demand begins to take a toll.
Lots of care decisions will need to be made, curative treatments will need to be explored. Your loved one might be able to make some of these decisions; in the case where they can’t, you and other family members have to step in.
Families and their loved ones begin a journey, they were not prepared for, one where they lack the right information and tools to navigate.
In the end, everyone’s quality of life is affected, but most especially, the sick loved ones.
Palliative care steps in like a trusted and knowledgeable friend, providing the right tools to help families navigate this journey.
With a robust team of interdisciplinary healthcare professionals, a care plan is developed that addresses the needs and preferences of the sick individual.
Family members and the patient are armed with the right tools and information to make the right care decisions including symptom management, emotional, spiritual, financial, and advanced care support.
Benefits of palliative care
Palliative care offers a holistic approach to patients facing chronic illnesses. It doesn’t only seek to explore curative treatment to manage symptoms, but focuses on the overall wellbeing including emotional and spiritual care.
Some of the benefits it provides to patients, their families, and caregivers include:
- Pain and symptom relief to help the individual live more comfortably with reduced suffering
- Guidance, assistance, and counseling for family members and caregivers
- Guidance for critical decisions such as treatment options and advance directives for care
- Seamless continuity and transition to a higher level of care (hospice) when health curative treatment fails and illness becomes terminal
- Improved quality of life for the individual and family with a focus on physical, emotional, and spiritual support.
Most people are not aware of the immense benefits of palliative care and tend to ignore it until their condition gets worse, and the stress of the illness has taken a huge toll on them and their families.
Experts advise that families seek palliative care as soon as a diagnosis of a serious illness is made. This way, the sick loved one and their family can receive all the benefits of the palliative care team, and prevent or limit the stress and challenges that come with a serious health condition.
The following principles typically guide the quality of care individuals with life-limiting illnesses and their families receive.
Principles of Palliative Care
The palliative care principles discussed in this article are adapted from the Last Acts and the International Association of Hospice and Palliative Care (IAHPC).
The Last Acts Principles of Palliative Care
The Last Acts Organization is a coalition of 400 organizations representing healthcare providers and patients all over the United States. They engaged in education to improve the care of sick and dying individuals and their families.
The Last Acts Task Force on Palliative Care and the Family developed these 5 principles of palliative care and offered a new and holistic way to look at palliative care.
Palliative care respects the goals and wishes of the individual
This principle ensures that the wishes of your loved one are upheld, as well as those of the family in situations where the sick individual can’t make decisions.
This includes:
- Helping families understand the illness, and what to expect in the future
- Ensuring that care decisions are honored, such as where to get health care, where to live, and the type of services needed.
- Collaborating with the health care team to ensure your loved one’s wishes and preferences are upheld
Palliative care looks after your loved one’s medical, emotional, social, and spiritual needs
This principle promotes that the overall well-being of the individual is looked after. This can include:
- Providing pain and symptom management to reduce suffering
- Offering encouragement and positive affirmations to your loved one
- Helping them say and do what they enjoy most to make their lives as meaningful as possible
- Helping your loved one face their fears and difficult moments
- Guiding and helping with the needed changes if the illness gets worse.
Palliative care supports the needs of the family members
This principle protects family members and ensures they also get excellent care. Family members and close relatives are sometimes referred to as “second patients” when a loved one is facing a chronic illness. The reason is that they are impacted by the stress and challenges that accompany the illness.
Care in line with this principle can include:
- Affirming and acknowledging that family members need physical, emotional, and spiritual help too
- Providing resources and education to help families understand the illness and likely prognosis
- Offering respite care and support for family caregivers to help them unwind and recharge
- Offering crucial information that may help alleviate the financial cost of caregiving and treatment options for their loved one
- Offering guidance, and counseling to family members to help them cope with mental stress.
Palliative care helps your loved one access needed healthcare providers and appropriate care settings
Instead of trying to figure it out and access care providers by yourself, the palliative care team should make this as seamless as possible. This can include:
- Ensuring that someone, maybe a social worker, is in charge to ensure the needs of your loved one are met
- Enlisting the services of various healthcare providers such as doctors, nurses, social workers, trained volunteers, dieticians, and therapists if needed
- Helping you access hospitals, home care, or out-patient palliative care services
- Personalizing care to the needs of your loved one and their family
Palliative care builds ways to provide excellent care at the end of life
This can include:
- Finding the best ways to care for sick and dying individuals
- Advocating for policies and guidelines to promote excellent palliative care
- Encouraging financial provisions for palliative and end-of-life care from private insurers, nonprofit organizations, and government agencies to cushion the financial costs of care.
The IAHPC Palliative Care Principles
The IAHPC is a nonprofit membership organization with a mission to inspire, inform, and empower governments, organizations, and individuals to increase access and optimize the practice of palliative care. They suggest the attitudes and principles required for successful palliative care which include:
A caring attitude
Palliative care providers must be sensitive, show empathy and compassion, and demonstrate concern for the individual. This caring attitude isn’t just for medical care but encompasses all aspects of the individual’s suffering.
Additionally, care must be dealt with from a non-judgmental approach regardless of the personality, intellect, ethnic origin, and beliefs of the individual.
Consideration of individuality
Individuals facing similar chronic health conditions shouldn’t be categorized on that basis. Doing so fails to recognize the psychosocial features that make that patient a unique person. This uniqueness should be taken into consideration when developing individual care plans.
Caregiver Support
This is similar to one of the principles from the Last Acts. Caregivers (family and relatives) can undergo physical and emotional distress especially when the sick individual is cared for at home. The IAHPC asserts that attention must be paid to their needs, as the success or failure of palliative care depends on the support provided by the caring relatives.
Cultural Considerations
Ethnic, racial, religious, and other cultural factors may significantly affect a patient’s illness and how care is administered. Palliative care providers must respect any cultural wishes and preferences the patient and their family may have.
Consent
The care team must seek the consent of the patient, family, or delage before any treatment is given or withdrawn. Doctors should explain medical decisions requiring consent in non-medical jargon, so it’s easily understood.
Additionally, the choice of site of care is a decision to be made by the family or patient, and hence, they have to be included in any discussion about that. The IAHPC advises that terminally ill patients should be cared for at home.
Communication
There should be clear communication between all parties involved in your loved one’s care. This includes healthcare professionals and family members. This is key in ensuring that decisions are not delayed and that the wishes of the patient or the family are honored.
Appropriate treatment
Treatment should be appropriate for a stage of the patient’s disease and prognosis. Futile treatment (treatment given just because you have to do something) is unethical. Over-enthusiastic investigators, inappropriate therapy, and patient neglect are not encouraged.
Comprehensive interdisciplinary care
Holistic care that captures all aspects of a patient’s illness and suffering should be provided by an interdisciplinary team including doctors, nurses, social workers, dieticians, therapists, and spiritual heads.
Care planning meetings should be held and are essential to create a plan of care for the patient. Who makes up your loved one’s care team depends on their illness and preferences.
Consistent medical care and continued reassessment
This principle requires that a care plan be established and continuously reviewed for the patient. Doing this reduces the likelihood of sudden changes that can be distressing for the patient and family.
Continued reassessment shouldn’t be limited to the medical aspect alone but should extend to psychosocial issues such as mental and spiritual health.
Advanced care planning
Palliative care providers must facilitate discussions around advanced care directives and record the outcomes. This ensures the patient’s wishes are honored and eliminates the conflict between the patient and family members.
Advanced care planning shouldn’t be held off until the patient is taken urgently to the hospital or nearing the end of life. Having the discussion early puts everyone on the same page.
These palliative care principles ensure that your loved one’s quality of life and that of the family should be at the center of palliative care. Find a provider that upholds these principles and uses them as guidelines for offering excellent palliative care.
How to Get Palliative Care
You might be asking “How do I bring together an interdisciplinary team to provide excellent care for my loved one?”
Well, this is where palliative care providers come in. Palliative care providers spearhead the palliative care process for your loved one and put together the palliative care team.
[how to get palliative care]
To get palliative care, you can:
- Ask your loved one’s primary doctor for a referral. Since they work closely with health care professionals, they would be able to recommend a palliative care provider close to you. In some instances, your loved one’s physician may start palliative care.
- If you’re in a hospital, ask if they have a palliative care team or if they can arrange for a consultation. Many hospitals have palliative care services available for inpatients.
- Ask friends and family for a recommendation. A relative may have used or is currently with a palliative care provider and can point you in the right direction.
- Use Google or Bing to find palliative care providers by searching with similar keywords as “palliative care providers near me.”
- Ask your local hospice center. Most hospice centers offer palliative care as well.
- Check with your loved one’s insurance provider to understand what palliative care services are covered under their plan. Some plans cover these services completely or partially.
- Utilize local resources like community centers, religious organizations, or support groups that might have information or connections to palliative care services in your area.
Where To Receive Palliative Care
Your loved one can receive palliative care in various settings based on your loved one’s needs and preferences:
- Hospitals: Many hospitals have dedicated palliative care teams that provide services to patients admitted for treatment of serious illnesses. These teams collaborate with the primary medical team to address pain, symptoms, and emotional support.
- Home-Based Care: Some palliative care providers offer home visits by healthcare professionals, including doctors, nurses, social workers, and therapists. This option allows patients to receive care in the comfort of their homes.
- Nursing Homes, Assisted Living Homes, or Long-Term Care Facilities: Residents in nursing homes, assisted living homes, or long-term care facilities like Amy’s Eden can often access palliative care services. These facilities might have partnerships with palliative care providers or have their own trained staff.
- Hospice Centers: Hospice care, a form of palliative care focused on end-of-life support, is usually provided in hospice centers or within the patient’s home. These services cater to individuals with terminal illnesses and offer comprehensive support for both patients and their families.
- Outpatient Clinics or Specialty Centers: Some healthcare facilities have outpatient palliative care clinics or specialty centers where patients can receive ongoing support and symptom management while continuing their regular treatment.
- Community-Based Programs: Community-based programs or organizations might offer palliative care services or support groups for patients and families dealing with serious illnesses. These could include counseling, educational resources, or respite care.
In Summary
Palliative care principles guide the quality of care your loved one receives. Your loved one must receive care from a provider that upholds these principles.
Additionally, when considering a palliative care provider, their history and reputation, services offered, certification and licenses of the care team, testimonials, and reviews are some ways to gauge the quality of care.
Amy’s Eden provides compassionate palliative care for individuals facing serious illnesses. Most of the palliative care principles discussed above guide the excellent care your loved one receives from us.
To learn more about the extent of our palliative care service, you can contact us today by phone or email. We are excited to be that trusted friend you can lean on in this challenging time.
