The True Benefit of Palliative Care: Talking to Patients About Their Goals and Wishes

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May 05, 2021

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Recent articles inAnnals of the American Thoracic Societyhighlight whygoals-of-care (GOC) conversationsandadvance care planning (ACP) sessionsshould be common in primary practices, specialty clinics, hospitals, and care facilities for patients facing the challenges of advanced lung disease and other advanced illnesses.
Suggesting a goals-of-care conversation should be as commonplace in a clinicians daily routine as taking vital signs.
We want our healthcare colleagues to know that we are prepared at any time to step in and help facilitate these conversations on their behalf, and to follow up by providing expert end-of-life care in patients preferred settings so that they receive thecomfort-focused modalities and supportthey want and deserve.
Engaging in and completing these conversations delivers measurable, high-impact results for all parties involved.
Where to Start a Goals-of-Care Conversation: 5 Questions
First, palliative care discussions identify key parameters for a patients care moving forward. Here are 5 questions you can ask your patient with advanced illness to help guide their care:

What do you understand about your disease?
What are your fears and concerns about your worsening health?
What is important to you?
What do you want your medical care to look like moving forward?
Are you ready to put your wishes and goals for care in writing so that you, your family, and your medical care team know your preferences?

For patients, GOC conversations result in better outcomes and greater satisfaction with care. For healthcare providers, they result in goal-concordant care that delivers measurable cost savings for patients who have incurable diseases likeadvanced chronic obstructive pulmonary disease (COPD)or lung cancer.
Data cited in this quarters perspective (Ruggiero, R. and Reinke, L.), in fact, notes that the inclusion of palliative carewhich is built around GOC conversations and advance care planningsaves an average of $3,237 per patient over the course of a hospital stay, compared with patients who do not receive palliative care.
Sooner Is Better
Our message to our non-hospice, non-palliative care healthcare colleagues is that the sooner these conversations take place, the better it is for everyone involved.Many patients with advanced lung disease, in fact, are eligible for hospice carelong before these conversations occur.
Follow along with an example of an advance care planning conversation:



If physicians or specialists do not feel comfortable with these difficult-but-rewarding conversations, trained VITAS facilitators are always available to meet with patients and familieswherever they are and whenever they are ready to decide the course of their care as their health declines.
VITAS Can Help You Educate Your Patients
Just as we can help physicians overcome their unease or perceived lack of training to engage in goals-of-care conversations, we can help patients overcome their concerns about the transition to hospice care, by:

reassuring patients that hospice care does not mean giving up the medications or treatments (e.g., inhalers, access to arespiratory therapist) that currently provide comfort and symptom management
explaining the value of theinterdisciplinary hospice teamto address physical, emotional, and spiritual needs
offering an individualized care plan and one offour levels of hospice careto meet their individual needs and goals
adjusting medication delivery seamlessly as their symptoms worsen to maintain comfort (e.g., switch from inhaled medication to nebulized versions in the home)
delivering the necessary equipment, medications, and suppliesdirectly to them, wherever they prefer to receive care, usually at a cost saving
easing the concerns of anxious family members and caregivers through regular team visits, training, educational materials, and 24/7 availability of VITAS clinicians to manage crises and keep their loved one comfortable

Goals-of-Care Conversations Should Be Commonplace
Our goal is to support our healthcare partners in private practices, specialty practices, hospitals, and care facilities. We want them to embrace a 360-degree view of advanced disease so that they know when its time to call VITAS for a goals-of-care conversation. Ideally, suggesting a GOC conversation should be as commonplace in a clinicians daily routine as taking vital signs, interpreting laboratory findings, and exploring treatment options, particularly for those with advanced illness.
What are signs ofhospice eligibility in a patient with advanced lung disease?

A no answer to the surprise question: Would you be surprised if this patient were to die in the next year?
Shortness of breath at rest or with minimal exertion
More than 50% of waking hours spent sitting or resting (Palliative Performance Scaleof about 50%)
More dependence for activities of daily living
Functional decline over time

We know that talking with patients about their disease and wishes is one of the hardestand most importantactivities that healthcare professionals can undertake, especially for patients with advanced illness.

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Essential Checklist for Supporting Aging Parents

As your parents age, the roles youve always known might start to shift. Where once they were the caregivers, suddenly you find yourself stepping into the role of protector and provider. The transition from child to caregiver can feel overwhelming as you take on the responsibility of ensuring their health, safety, and overall well-being.Balancing these new duties with your own lifeyour career, your family, your personal timecan quickly become emotionally and physically draining. Without a clear plan, its easy to feel trapped caring for elderly parents. But with the proper knowledge, preparation, and resources, you can offer your parents the care they deserve without sacrificing your well-being.Caring for aging parents is both rewarding and challenging, but it doesnt have to be done alone. 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Staying organized, keeping track of appointments, and collaborating with healthcare professionals can significantly reduce stress and improve the quality of care your parents receive.Heres a health and medical care checklist for elderly parents to help you stay on top of their care needs:Schedule regular physical exams and screenings: Ensure your parents receive annual check-ups, including vision and hearing tests, blood pressure monitoring, and screenings for conditions like diabetes and heart disease. These routine exams are essential for identifying potential issues early in elderly parents.Create a medication list: Keep an up-to-date list of all prescriptions, including dosages, schedules, and over-the-counter medications. Store medications in a clearly labeled pillbox to help prevent confusion and ensure theyre taken correctly.Set medication reminders: Use phone alerts, caregiver apps, or automatic pill dispensers to remind your parents when its time to take their medications. This helps reduce the risk of missed doses and ensures consistency in their treatment plan.Research and manage chronic conditions: Take the time to learn about any chronic conditions your parents may have, such as diabetes, arthritis, or heart disease. Understanding these conditions can help you anticipate care needs, manage symptoms, and make informed decisions about their treatment.Establish healthcare partnerships: Foster a good relationship with your parents primary care physician and any specialists they see regularly. Open communication with healthcare providers ensures that you stay on top of any changes in your parents health and treatment plans.Arrange for home health aides: If your parents need extra support with medical care or daily activities, consider hiring home health services. These professionals can assist with everything from medication management to personal care, making life easier for both you and your aging parents.Prioritize preventive care: Schedule regular flu shots, vaccines, and cancer screenings (like mammograms and colonoscopies). Preventive care is key to reducing the risk of illness and maintaining your parents health.Organize medical records: Keep a well-organized file of all medical records, including test results, appointment notes, and treatment plans. Having everything in one place ensures that youre always prepared for doctor visits and can quickly reference important information when needed.Living Environment & SafetyA safe and accessible home is essential for reducing accident risks and helping your elderly parents maintain their independence for as long as possible. As mobility, vision, and hearing decline, even minor adjustments to their living space can make a significant difference in both safety and comfort. The right safety measures and accessibility features not only enhance security but also increase their confidence in navigating their environment.Heres a safety checklist for elderly parents to help ensure their home is both secure and comfortable:Perform a safety evaluation. Look for potential hazards around the home, such as loose rugs, uneven flooring, or poor lighting.Install safety modifications: Add grab bars in all bathrooms, check that handrails on staircases are secure, and install non-slip mats in showers or any place with rugs.Optimize the lighting: All areas of the home especially hallways and staircases should be well-lit. Consider adding motion detectors to prevent late-night falls. Declutter common areas: Clear all pathways and high-traffic areas to reduce the risk of tripping or falling.Consider accessibility upgrades: If wheelchair or scooter access is needed, it can be a good idea to install ramps, stairlifts, or wider doorways.Prepare for emergencies: Install smoke detectors, carbon monoxide detectors, and an emergency alert system and check the batteries often. Secure essential items: Keep frequently used items, like medication, phones, chargers, and remotes, within easy reach.Financial Management & Legal ConsiderationsOne of the most challenging aspects of caring for aging parents is navigating the financial and legal responsibilities that come with it. The complexity of managing their finances, securing legal protections, and planning for future care can feel overwhelming. However, taking proactive steps now can significantly reduce caregiver stress down the road and help ensure that your parents needs are met without jeopardizing their financial security.Organizing finances and establishing legal safeguards early on is key to maintaining control and providing peace of mind. A strong financial and legal plan not only helps you manage their care more effectively but also protects their assets and honors their wishes.Heres a financial management and legal checklist to guide you through these important tasks:Assess financial health: To get a clear picture of their financial situation, review all income they have coming in and check amounts in savings, investments, expenses, and debts.Set up power of attorney (POA): Someone trustworthy should be appointed to make financial or healthcare decisions if a loved one or a parent becomes incapacitated and unable to do so for themself.Review legal documents: Ensure that your parents Wills and any Trusts are up-to-date. If there have been any significant life changes (e.g., marriages, divorces, births, or deaths), their Estate Plan may need to be revised. An estate attorney or financial planner can help with any necessary updates.Organize important paperwork: Gather all critical documents, including insurance policies, tax records, property deeds, and any legal paperwork like wills, powers of attorney, and healthcare directives. Store them in a secure, easily accessible place, such as a fireproof safe or a digital file with encryption.Plan for long-term care costs: Its essential to have open, honest conversations with your parents about the reality of paying for long-term care, whether its assisted living, in-home care, or a nursing home. Research the costs involved and explore funding options like long-term care insurance, Medicaid, or personal savings.Monitor bills and expenses: Alleviate financial stress by setting up automated payments to manage recurring monthly expenses like utilities, car and insurance payments, and credit cards.Explore benefits: Take the time to research government programs that could help reduce financial strain. Check if your parents are eligible for Medicare (healthcare for those 65+), Medicaid (for low-income individuals needing long-term care), or any veteran or pension benefits they may be entitled to. Emotional & Social SupportAs your parents age, emotional well-being becomes increasingly important for maintaining their quality of life. Age-related challengeswhether physical, cognitive, or socialcan take a toll on their mental health. Loneliness in retirement, in particular, is a common issue among older adults, leading to vulnerability and affecting their overall well-being. Research has shown that prolonged loneliness is linked to a higher risk of depression, heart disease, and even cognitive decline.Loneliness in older adults has a significant impact on mental health, potentially leading to depression, anxiety, and even cognitive decline; therefore, actively promoting social engagement and support systems is essential for maintaining well-being in later years. Factors like retirement, losing loved ones, and reduced mobility can heighten social isolation, and loneliness can cause significant mental health and emotional decline. Mental health and overall quality of life can be improved by promoting social engagement and fostering a supportive community network. Talkspace therapist Reshawna Chapple, PhD, LCSWAs a caregiver, its crucial to foster connections and create opportunities for meaningful social engagement. Helping your parents maintain a strong social network and encouraging regular social interactions can significantly enhance their happiness, boost their mental health, and improve their overall quality of life.Heres a checklist to ensure their emotional needs are met:Encourage regular social activities: Help your parents stay connected to a vibrant social circle by encouraging regular interactions with friends, family, or community groups. Whether its attending local events, joining senior clubs, or meeting up for coffee, staying socially engaged is vital for their emotional well-being.Monitor mental health: Be attentive to signs your elderly parent needs help, such as withdrawal from activities, irritability, or changes in sleep or appetite. If you notice symptoms of depression or loneliness, address the concerns early on. Promote hobbies and interests: Encourage your parents to continue doing the things they love. Whether its gardening, knitting, playing cards, doing puzzles, or listening to music, providing them with opportunities to engage in familiar, enjoyable activities can boost their mood, stimulate their mind, and reduce feelings of isolation.Facilitate communication: Thanks to modern technology, staying in touch is easier than ever. Set up video calls or phone check-ins to stay connected, and encourage other family members and friends to do the same. Arrange for mental health resources: Ensure your parents have access to professional support if they need it. This may include therapy or counseling to address issues like anxiety, depression, or stress. Many therapists offer in-home visits, or there may be online counseling options available that fit their needs.Celebrate milestones: Make special dates like birthdays, anniversaries, and other meaningful occasions memorable by organizing small celebrations or even virtual gatherings. A phone call, video chat, or thoughtful gesture can go a long way in showing them they are loved and appreciated.Daily Living & Personal CareAs your parents age, daily tasks and personal care may become more challenging. However, these tasks are essential for maintaining their dignity and comfort, both physically and mentally. Supporting them in managing these activities helps them feel cared for while also preserving their independence as much as possible. With thoughtful planning, you can ensure their needs are met consistently and with respect.Heres a daily living and personal care checklist for elderly parents:Help with grooming and hygiene: Assist your parents with bathing, dressing, and grooming, providing support while respecting their independence. Adaptive tools can make these tasks easier and help them feel more comfortable and dignified.Prepare nutritious meals: Create meals that meet dietary restrictions, needs, or preferences. If cooking is a challenge, consider meal planning or delivery services to ensure theyre getting proper nutrition without the stress.Promote physical activity: Encourage gentle exercises like walking, stretching, water aerobics, or gentle yoga to keep them active and mobile. 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By addressing these critical topics now, you can focus on creating meaningful memories together in the future.Consider this checklist for end-of-life planning and wishes:Discuss advanced directives: Have an open conversation about your parents wishes for future medical care. Encourage them to create an advanced directive, such as a living will or healthcare proxy, to ensure their preferences are followed if they can no longer communicate their wishes.Create a funeral or memorial plan: Talk about their preferences for a funeral or memorial service. Discuss whether they have any specific ideas about the ceremony, location, or who theyd like involved, and document these wishes to make things easier for the family when the time comes.Establish a legacy plan: Help your parents gather important family information they wish to pass down, such as photos, letters, or keepsakes. Discuss any items or assets they want to leave to specific people, family members, charities, or organizations. A legacy plan ensures that their memories and wishes are preserved for future generations.Review insurance and benefits: Ensure life insurance policies and other benefits are up-to-date and that all beneficiaries are accurate. Confirm coverage details and address any gaps to provide financial security for your parents and their loved ones.Explore hospice care options: Research and understand hospice care options, ensuring that your parents will receive compassionate, personalized care when the time comes. Having these arrangements in place ahead of time ensures a smoother transition and greater peace of mind.Self-Care for the CaregiverBeing a caregiver for older parents is one of the most compassionate roles you can take on, but its also one of the most demanding. Even with the best intentions, caregiving can leave you physically, mentally, and emotionally drained. Neglecting your own well-being can lead to caregiver burnout, stress, or even depression, making it harder to provide the care your parents need.Taking time for self-care isnt a luxuryits a necessity. By prioritizing your own health and happiness, youll be better equipped to continue offering support to your parents in the long run. The below self-care tips for caregivers will help you maintain balance and well-being as you navigate your caregiving journey.Set boundaries: Establish clear boundaries to avoid taking on more than you can handle. Define the tasks youre responsible for, and dont hesitate to delegate when needed. Take regular breaks: Schedule regular breaks to rest, relax, and recharge. Whether its a few minutes each day or a weekend getaway, time away from caregiving is critical to maintaining your physical and mental health. Practice stress management: Incorporate relaxation techniques like mindfulness, meditation, or yoga into your routine. These practices can help reduce stress, improve emotional well-being, and clear your mind, making you more resilient in the face of caregiving challenges.Seek support: Dont hesitate to lean on others for help. Join a caregiver support group, talk to friends, or confide in family members. Sharing your experiences and feelings can provide a sense of relief and remind you that youre not alone in your journey.Stay active: Physical activity is crucial for both your body and mind. Regular exercisewhether its walking, swimming, or light stretchinghelps maintain your energy levels, reduce stress, and boost your mood.Eat well and sleep enough: Fuel your body with nutritious foods, drink plenty of water, and prioritize restful sleep. A healthy diet and sufficient rest will keep your mind sharp, your body energized, and your stress levels in check.Consider therapy: If youre feeling emotionally overwhelmed or struggling with the demands of caregiving, consider therapy. A therapist can teach you how to navigate the emotional demands caregiving requires.The physical and emotional demands of caregiving can leave caregivers feeling rundown and overwhelmed. With a lack of privacy and competing responsibilities, caregiving for your parents can often feel like a reversal of roles.  Talkspace therapist Reshawna Chapple, PhD, LCSWSupporting Your Parents Well-Being with TalkspaceCaring for aging parents is a deeply rewarding yet often overwhelming experience, and it can take a significant emotional and physical toll on both you and your loved ones. Recognizing that you need support is an essential step in maintaining your own mental and emotional well-beingand ensuring your parents receive the care they deserve.While a comprehensive checklist for caring for elderly parents is a great start, sometimes you need additional help to navigate the challenges of caregiving. Thats where Talkspace comes in. Talkspace offers accessible, affordable online therapy options for both you and your parents, ensuring that both of you can receive the mental health support you need, right when you need it.For you, individual therapy can be a lifelinehelping you manage the stress, anxiety, and burnout that often accompany caregiving responsibilities. For your parents, we offer online therapy covered by Medicare, making mental health care affordable and accessible.Explore Talkspace today to discover how easy it is to get the help you need, for both you and your parents, whenever and wherever you need it.Sources:Social isolation, loneliness in older people pose health risks. National Institute on Aging. April 23, 2019. https://www.nia.nih.gov/news/social-isolation-loneliness-older-people-pose-health-risks. Accessed November 18, 2024.Talkspace articles are written by experienced mental health-wellness contributors; they are grounded in scientific research and evidence-based practices. Articles are extensively reviewed by our team of clinical experts (therapists and psychiatrists of various specialties) to ensure content is accurate and on par with current industry standards.Our goal at Talkspace is to provide the most up-to-date, valuable, and objective information on mental health-related topics in order to help readers make informed decisions.Articles contain trusted third-party sources that are either directly linked to in the text or listed at the bottom to take readers directly to the source.