Healthcare decisions aren’t always easy particularly when facing the subject of death and the process it involves. Whether death is sudden or follows a long illness it can be a difficult topic to discuss. It makes many uncomfortable. Not knowing what to say or ask can bring up many emotions including fear, sadness, and anxiety.
All of us will experience the death of a loved one at some point in our lives, and we all will face the reality of our own mortality as well.
Having a truthful discussion and understanding your options can make sure that your wishes for end-of-life care are known and respected. Having prepared documented instructions well in advance for end of life alleviates stressful decisions and ultimately can support those you love through their bereavement.
To help us all understand better and to alleviate the fears regarding this subject, I have invited Cyndy Dalton RN, Hospice Nurse, and Advance Care Planning/ Life Quality Coach to share with us her extensive knowledge in this area of wellness. Cyndy has over 33 years of experience navigating healthcare, particularly involving difficult end of life choices for people and their families throughout the United States.
Advance Care Planning/ Life Quality
By Cyndy Dalton RN, BSN, CHPN, MSOL
Why is resilience important for a happy, quality life?
Resilience is important for a happy, quality life because it helps us adapt to challenges, cope with adversity, maintain emotional well-being, build positive relationships, pursue goals, and boost self-confidence. Overall, being resilient allows us to navigate life’s ups and downs with a positive mindset, leading to greater happiness and satisfaction.
It is stepping out of surviving and stepping into thriving…no matter the challenges we face.
How is knowledge connected to resilience?
Having knowledge is important for being resilient because it helps us deal with tough situations. When we know about things like possible problems, how to cope with them, and what resources are available, we can make better choices and adjust to challenges.
Resilience grows when we learn from past experiences, gain new skills, and expand what we know. Knowledge helps us prepare for difficulties and come up with solutions before they happen. It also makes us feel more confident and capable, which is really important for being resilient.
In a nutshell, to paraphrase Maya Angelou, once we know better, we can do better.
How can talking about death and dying be considered preventive healthcare?
Talking about death and dying may not be directly categorized as preventive healthcare in the traditional sense, but it can have several indirect benefits for individuals and society.
Discussing death and dying indirectly promotes preventive healthcare by facilitating advance care planning, reducing psychological burden, improving communication and support, raising awareness of end-of-life choices, and destigmatizing death, encouraging overall health discussions.
It helps us to be resilient individuals and resilient healthcare consumers. And as we have learned, knowledge leads to resilience and resilience lends itself to a better quality of life.
Death is the one event will know we will all experience. The 85-year-old Harvard Study on happiness concluded that a primary factor was relationships; connection. It is the one sure thing that connects us all, and in this way, I believe it can serve as a true north for a wave of connection, and happiness, for anyone willing to join in the process.
What is the difference between hospice and palliative care?
All hospice care IS palliative, but all palliative care is not hospice.
Palliative care is a specialized approach to healthcare that enhances the quality of life for individuals with serious illnesses. It can be provided at any stage of the illness, alongside curative treatments, and aims to address physical symptoms, emotional needs, and spiritual concerns. A multidisciplinary team collaborates to create an individualized care plan, incorporating effective communication and shared decision-making.
By focusing on pain and symptom management, palliative care offers relief and comfort to patients. It also recognizes the emotional and psychological impact of serious illnesses, providing counseling and support to patients and their families. Open discussions about treatment options, prognosis, and goals of care empower patients to make informed decisions aligned with their values and preferences.
Palliative care extends support to family members as well, acknowledging the challenges they face as caregivers. Ultimately, palliative care aims to empower patients and families, enhancing their well-being and helping them navigate the complexities of serious illnesses with dignity and comfort.
There is a great example of the benefits of palliative care (based on a true story): Gigi, a 58-year-old woman, mother, grandmother, and breast cancer survivor, developed debilitating neuropathy in her hands after a successful course of chemotherapy. Before her cancer diagnosis, Gigi had a lucrative and rewarding career as a hairstylist. Now unable to use her hands, she became depressed and pulled away from those close to her. She had survived the cancer, and yet, was now struggling with notable life quality issues related to the residual effects.
What is hospice care?
Hospice care is compassionate care for those with advanced life-limiting illnesses, focusing on improving quality of life. It’s not a place, but a way of choosing care near the end of life. It eases suffering and enhances comfort based on individual needs. Goals may include attending special events or dying at home surrounded by loved ones. Patients and their caregivers define the treatment plan.
What are some of the most common myths regarding hospice?
Myth #1: Hospice is only for the last few days of life.
Reality: For an individual to be qualified for hospice care, a prognosis of 6 months or less, if the disease progresses as typically expected, is the guideline. Studies show that the earlier those who qualify sign on, the more likely they are to live for the time they have left, and to die, with a self-defined level of quality. Some people are on hospice for years. Each person, care plan, and each disease course is different.
Myth #2: Choosing hospice means giving up on treatment.
Reality: Hospice focuses on comfort care, but patients can still receive treatments to manage symptoms and improve their quality of life. They can also change their minds and seek curative treatment at any time.
Myth #3: Hospice is a place to go to die.
Reality: Hospice is a type of care, not a place to be. Hospice care is primarily provided in the patient’s preferred place of residence, such as their home or a nursing facility. Inpatient facilities are available for specialized crisis management.
Myth #4: Hospice care is expensive.
Reality: Hospice care is typically covered by Medicare, Medicaid, and private insurance plans. Non-profit organizations and foundations also cover those who can’t afford it.
Myth #5: Hospice is only for cancer patients.
Reality: Hospice care is available for individuals with various terminal illnesses, not limited to cancer. It has specific guidelines for disease stages for several diagnoses and provides specialized care plans tailored to each patient’s needs.
Myth #6: Hospice means being alone and isolated.
Reality: Hospice care teams consist of professionals who provide comprehensive physical support, along with emotional and spiritual assistance, as well. 24/7 on-call services are available for any concerns or emergencies.
Myth #7: Hospice is only for the elderly.
Reality: Hospice care is available to individuals of all ages, from infants to adults, based on prognosis and comprehensive care needs.
What is the Medicare Hospice Benefit?
- The Medicare hospice benefit is a program for end-of-life care.
- It provides comprehensive care for individuals with a life expectancy of six months or less.
- Services covered include medical, nursing, emotional, and spiritual support.
- There are four levels of care within the Medicare hospice benefit:
- Routine home care
- Continuous home care
- General inpatient care
- Respite care
- Each level of care is tailored to meet the specific needs of the patient at different stages of their illness.
- Medicaid and most private insurance companies typically cover hospice care as Medicare does.
- It is important to verify coverage and financial expectations with the professionals involved during the referral and admission process.
What is Advance Care Planning?
The basics are simply described:
- Advanced care planning enables individuals to make decisions about their future medical care.
- It involves discussing and documenting preferences, values, and goals.
- It ensures that healthcare wishes are respected even when individuals are unable to communicate them directly.
- Topics covered in advance care planning discussions include resuscitation preferences, life-sustaining treatments, palliative care, and organ donation.
- Benefits of advance care planning include:
- Respecting and honoring an individual’s healthcare wishes.
- Alleviating stress and uncertainty for the patient and their loved ones.
- Promoting open communication among family members.
- Reducing potential conflicts and fostering understanding.
- Encouraging patient-centered care from healthcare providers.
- Having documented instructions helps healthcare professionals provide personalized care.
- Advanced care planning brings peace of mind to individuals and their loved ones.
- It empowers individuals to maintain control over their healthcare decisions.
- It promotes a sense of unity and unity within families during challenging times.
What are the types of Advance Care Plans?
Advance directives are legal documents that outline your healthcare preferences in certain situations. They include:
- Living will: It specifies the medical treatments you want if you’re seriously ill or permanently unconscious. It doesn’t appoint a decision-maker for you.
- Durable power of attorney for health care: This designates someone you trust to make healthcare decisions on your behalf if you can’t. It’s more practical if you have a trusted person available.
- Physician orders for life-sustaining treatment (POLST) or Medical orders for life-sustaining treatment (POLST): For those with serious illnesses, it ensures you receive desired medical treatment and doesn’t replace other advance directives.
- Do not resuscitate order: It’s a request to not receive CPR if your heart stops or you stop breathing. DNR orders are universally accepted and can be independent of other advance directives. Most simply, it is allowing natural death to occur when the heart stops beating and breathing stops.
I believe it is very important for healthcare consumers to understand that Advance Care Plans are legal documents that give medical directives for physical decisions when someone cannot speak for themselves.
However, even more important is understanding that the process of evaluating what one’s wishes would be if unable to make their own decisions is heavily dependent on mental, emotional, and existential considerations based on personal values. It is complex, multi-faceted, and can be hard to do. But it is such important work, and this is where seeing it as preventive care is so pivotal to the process.
Now is the time to invest in your first step towards a resilient future, a better quality of life, and to give voice to your personal choices. Get the help needed to make some of your life’s most difficult health decisions for Advanced Care Planning / Life Quality.
For more information or to schedule a Private Consultation with Cyndy Dalton, RN go to:
cyndydalton.com and click on Contact Cyndy, OR send an email to: firstname.lastname@example.org OR call 904-579-4555.
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