Five Tips for Families Facing End-Of-Life Care

Author

Commonwealth Hospice

Posted on

Oct 04, 2022

Book/Edition

Pennsylvania - Greater Pittsburgh Area

In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents’ death panel. 

For the many other families facing the same journey, experts’ best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if you’ve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. “It’s all pre-planning really,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. “People really do cope well if they have a conversation about care with their families early. When families don’t have the conversation, that’s when there’s turmoil because no one is prepared and it’s inevitable.” 


Here are some tips for making end-of-life care easier to handle: 


Keep communication open. Have “the conversation” early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. “The last place you want to have a conversation about who will take over as a health care agent is in an emergency,” says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. “This can be the adult child or the parent’s best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better.” 


Malley recommends opening the conversation to the entire family. “So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, ‘O.K., Mom and Dad, here are a list of questions you need to answer.’ Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyone’s wishes,” he says. 


Involve your doctor. “I think it’s really important that when these medical decisions are made, the family and the doctor are present,” says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. “Not all doctors are comfortable talking about end-of-life kinds of issues.” Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed. 


Get it in writing. “It’s not enough to just have a conversation once and not talk about it again and it’s also not enough to fill out legal documents and never discuss wishes with family members,” says Malley. “Both need to be done.”  Aging with Dignity has created “Five Wishes,” a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or don’t want, and what they want loved ones to know. 


Here are some other documents the National Institute on Aging recommends for everyone: 

  • Living will: records a person’s wishes for medical treatment near the end of life 
  • Durable power of attorney for health care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so 
  • Do-not-resuscitate (DNR) order: instructs health care professionals not to perform cardiopulmonary resuscitation if a person’s heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person’s medical chart 
  • Will: indicates how a person’s assets and estate will be distributed upon death 
  • Durable power of attorney for finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs 
  • Living trust: provides instructions about the person’s estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs 


Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples. 

“Doctors feel compelled to treat, no matter what, most of the time,” says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. “They are also afraid of getting sued for ‘hastening death.’ The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense.” 


Recognize that you might not be the best person to take over. “The person who becomes the health care proxy needs to be comfortable with that,” says Levine. “Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be.” Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later. 



Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. “I often see people who get into hospice care and wonder why they didn’t hear about it sooner,” says Davis. In many cases, that may be because people see hospice as “giving up” — though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients. 

Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. “Talk about it early because although we all see ourselves dying in old age, it’s healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one,” says Davis. 

Other Articles You May Like

Understanding the Many Benefits of Hospice Care

When a loved one is diagnosed with a terminal illness, it can be a difficult and emotional time for both the patient and their family. Hospice care provides a specialized form of medical care that focuses on the comfort and quality of life for patients who have a limited life expectancy. Hospice care not only benefits the patient, but it also provides support and assistance for their caregivers. In this article, we will explore the benefits of hospice care for both patients and caregivers.For Patients:Pain and Symptom Management: Hospice care specializes in providing comfort care, which means that the medical team focuses on managing pain and symptoms associated with the illness. This can include providing medication and other therapies to alleviate discomfort.Emotional Support: Hospice care teams include trained professionals who offer emotional and spiritual support to patients and their families. These professionals can provide counseling, emotional support, and assistance with coping strategies to help patients and their families manage their emotions during this difficult time.Dignity and Respect: Hospice care is designed to provide compassionate care that is focused on the patients dignity and respect. Patients are treated as individuals with unique needs, preferences, and beliefs. The goal of hospice care is to ensure that patients are comfortable and treated with respect throughout the entire end-of-life process.Personalized Care: Hospice care is tailored to meet the individual needs of each patient. This means that care is provided based on the patients unique medical condition, personal preferences, and goals. The hospice care team works with patients and their families to develop a care plan that is customized to their needs.Support for Family Members: Hospice care offers support for family members who are caring for their loved ones. This can include counseling, respite care, and assistance with end-of-life planning.For Caregivers:Respite Care: Hospice care provides respite care for caregivers, which means that a trained professional takes over caregiving responsibilities for a short period of time so that the caregiver can take a break. This can be particularly helpful for family members who are caring for a loved one 24/7.Emotional Support: Hospice care teams offer emotional support to caregivers as well. Caregivers often experience stress, anxiety, and depression as they care for their loved ones. Hospice care professionals can provide counseling and other resources to help caregivers manage their emotions.Education and Training: Hospice care teams can provide education and training to caregivers so that they are better equipped to care for their loved ones. This can include training on medication management, pain management, and other aspects of end-of-life care.Support for End-of-Life Planning: Hospice care teams can help caregivers with end-of-life planning, which can include assistance with advance directives, funeral planning, and other important decisions that need to be made.Continued Support: Hospice care teams provide continued support to caregivers even after their loved one has passed away. This can include grief counseling and other resources to help caregivers cope with the loss of their loved one.Hospice care provides specialized medical care that focuses on the comfort and quality of life for patients who have a limited life expectancy. Hospice care not only benefits the patient, but it also provides support and assistance for their caregivers. Hospice care offers a range of benefits, including pain and symptom management, emotional support, dignity and respect, personalized care, respite care, education and training, support for end-of-life planning, and continued support for caregivers after their loved one has passed away. If you or a loved one are facing a terminal illness, it is important to consider the benefits of hospice care and to discuss this option with your healthcare provider. For more information about hospice care services please contact our caring team today.

How to Support a Grieving Friend Who Has Lost a Loved One

Unfortunately, its likely to happen to each of us when we least expect it: we hear the news that a friend or family member has lost a loved one through an unexpected or expected death. We may have an immediate feeling of doubt about how we should respond. What do we say? What do we do? What if we say or do the wrong thing?These are important questions because what we say or do can either relieve emotional pain or make it worse.Yet, by understanding a few important things about grieving and mourning we can be confident that we can help and not hurt.Understand the Many Faces of Emotional ShockEven when a death is expectedlike after a long, serious illnessyour friend is probably experiencing a roller coaster of strong emotions. According to the American Cancer Society, the shock of losing a loved one can manifest itself anywhere from disbelief, anger, uncertainty, denial or numbness. In my own experience, Ive seen people whose numbness is misinterpreted as peace or acceptance, leading others to say, Shes so strong or Hes taking this so wellyet when the funeral is over and everyone has gone home, they fall apart.Remember that your friend is likely to feel many emotional ups and downsand a period of strength might be followed by real anguish.Communicate Your Sorrow SimplyIm so sorry for your loss, or I wish I knew what to sayplease know that I care, are simple and comforting ways to let your friend know that you care. When we stray into clichslike Shes in a better place now, or It was his time to go,the person who is grieving may feel wounded because they simply want their loved one at their side. This can be especially true of parents who have lost children.If youre completely unsure of what to say, being nearbyyet silentalso communicates that you care.Show Your Support through ServiceYou can decrease your own feelings of helplessness or powerlessness by serving your grieving friend. However, during the strongest moments of grief your friend may not be able to tell you what he or she needs. If thats the case, you might consider doing anything that may be helpfullike mowing their lawn, doing their dishes, or helping them with the funeral. But remember that your service shouldnt end with the funeral.Thoughtful service will continue to show your concern.Listening May Be the Most Helpful Thing You Can DoYour friend may need to talk often. He or she may have to discuss the details of their loved ones deathand may need to talk about it repeatedly. This can be part of the grieving process and you can help by being a patient, non-judgmental, listening ear.But take your cues from your friend because talking about their loved one might be painful. One friend recently told me, One of the most difficult things for us was when someone wouldcasually [mention our childs name]. To us, mentioning his name was a reverent thing that we didnt do very often except among each other. Even then, we were careful about it. It felt very jarring when others were too casual about it.Dont Rush the Grieving ProcessExperts in the field of emotional health and grieving concur that the processand timeframeof grieving is different for everyone. As a friend, you need to be ready for the long haul. It may literally take years for a grieving person to feel stable with their emotions. Encouraging them to get outside and take part in social activities may be helpful, but shouldnt be forced. Give your friend time to adjust to their feelings and emotions and dont be surprised if their grieving lasts much longer than you expect.Dont be Offended if Your Friend Shows AngerAnger can be a normal emotion during the grieving process. Grief can heighten negative emotions and a normally kind person who is grieving may strike out at others emotionally. Understand that its a product of their grief and dont take it personally. You can support them best by maintaining a level head and forgiving them when theyre not at their best.Grief and Mourning Shouldnt be Interpreted as a Lack of Religious FaithAbout half the people in the world believe in an afterlifeand that belief is typically tied to religious views. While those who are grieving may find comfort in their belief that their loved one lives on in some other realm, that belief may not override the pain of separation. Often, grieving is about being separated from our loved onesregardless of our beliefs.Id love to hear your thoughts on this subject, so please leave a comment in the comments box. I also invite you to subscribe to this blogwhich will cover a variety of healthcare topics.A short post cant cover everything, so if youd like more information on this topic I encourage you to research the Five Stages of Grief by Elizabeth Kubler-Ross. Also, see the U.S. Governments excellent A LifeCare Guide to Helping Others Cope with Grief. If youre concerned that your friends grief has developed into thoughts of hurting themselves or others, please contact a mental health professional.This post is dedicated to the memory of Bailey Rae Bullock, Matthew Bullock, Dan Bishop, Joe Adams, Michelle Pereira, and the many others who's passing profoundly affected me.

How Hospice Care Supports Patients & Families Alike

Hospice is a specialized form of medical care that focuses on providing comfort and support to individuals facing life-limiting illnesses, such as cancer, heart disease, or lung disease, among others. It aims to help patients and their families be more comfortable and confident while providing the best medical attention possible.Hospice care provides a holistic approach to care, addressing not only the physical needs of the patient but also the emotional, spiritual, and social needs of both the patient and their family. This approach helps patients to be as comfortable as possible, by reducing pain and other symptoms, and allowing them to focus on their well-being and quality of life. Hospice care can also provide relief to family members who are struggling to cope with the physical and emotional demands of caring for a loved one.One of the key benefits of hospice care is the team of healthcare professionals, called the interdisciplinary team, that work together to provide comprehensive care. This team may include a physician, nurse, social worker, chaplain, and a volunteer, all working together to ensure that the patients needs are met. Hospice care also provides access to a variety of services and resources, such as counseling, support groups, and home health aides, all designed to help patients and families be as comfortable and confident as possible.Hospice care is typically provided in the patients home, although some hospice programs may offer inpatient services, such as a hospice center or hospital, for patients who require more intensive care. This allows patients to receive the medical attention they need while remaining in a familiar and comfortable environment.Another important aspect of hospice care is the focus on end-of-life care and decision-making. Hospice care providers work with patients and families to help them understand what to expect as the patients illness progresses and to help them make informed decisions about end-of-life care. This may include decisions about treatment options, symptom management, and advance care planning.In conclusion, hospice care provides a unique approach to medical care, focusing on providing comfort and support to patients and families facing life-limiting illnesses. The holistic approach of hospice care, the team of healthcare professionals, and the focus on end-of-life care, all help to make patients and families more comfortable and confident while receiving the best medical attention possible.

Local Services By This Author

Commonwealth Hospice

Hospice 4955 Steubenville Pike Ste 125, Pittsburgh, Pennsylvania, 15205

At Commonwealth Hospice, your well-being is our number one priority. We recognize you have many choices available for a hospice provider, and our goal is to provide a team of healthcare professionals that will fill these days with care, compassion, and support. Our experienced team is committed to giving our clients the care they want, while offering guidance through some of life's most challenging circumstances. We strive to make a positive difference in the lives of our patients, families, and the communities we serve.  We invite you to find out more about our hospice program, our staff, and what makes Commonwealth Hospice a preferred provider.Experience matters. The leadership group at Commonwealth has decades of experience. We've seen what works and, more importantly, what could be done better. All of us have personally experienced hospice with a loved one, so we know what you're going through. Quality over quantity. Commonwealth is not a large, profit-driven healthcare network that treats people like numbers. We are smaller, local, and our only goal is to provide unparalleled care for our patients, their families and to support the facilities where many of our patients reside. Commitment to caregiver and family support. Being the primary caregiver to a family member on hospice is difficult. It is natural to experience self-doubt, anxiety and worry, in addition to the tremendous sadness associated with the impending loss of someone dear to you. At Commonwealth, we understand the challenges primary caregivers and other family members face, and have made it our mission to provide the best possible support and education. Our nurses and aides will take the time to sit with you, craft a comprehensive care plan, and make sure you have a full and complete understanding of what to expect. We'll discuss medications, any equipment that may be, or may become, necessary, as well as likely disease progressions so you are as prepared as possible for the road ahead. Should something come up between regular visits, staff are available 24 hours a day. Caregiver, facility and community education. Commonwealth has a dedicated Education Department to support primary caregivers and families, and to provide Pennsylvania Department of Human Services approved in-services for staff in facilities where our patients reside. Trainings cover a variety of topics, including infection control and proper transfer techniques, as well as First Aid/CPR, and medication administration. We also offer 'virtual dementia' training, designed to help us all better understand the struggles and challenges experienced by people suffering from dementia. Our goal is to support and educate our patients' caregivers in every way we can, whether that caregiver is an aide in a facility or a family member in the home.