Patients who suffer from congestive heart failure have usually lived with the condition for a long time before they get to the point where they would consider hospice. Just because you or your loved one is no longer able to receive treatment that would significantly lengthen life, that doesn’t mean there aren’t things that can be done to increase quality of life and overall comfort. This is where hospice comes in.
Deciding to ask about hospice is not easy, since setting up that kind of care entails admitting that you or someone you love is in the final months of life. Hospice care is intended specifically for patients who have a prognosis of six months or fewer to live. With congestive heart failure, it can be very difficult to tell when that point has arrived. Patients sometimes live with frustrating symptoms for years or even decades, and it’s not always obvious that these symptoms have worsened. An evaluation from a doctor will guide you in this matter. However, it is never too early to get some general information about hospice. Checking into the options will help you feel more comfortable later.
Watching for Signs of Worsening Symptoms
Be vigilant when it comes to monitoring symptoms. There are several signs to watch out for; if you notice any of them, it might be time for a frank discussion with the doctor. Are bouts of angina – chest discomfort due to insufficient blood flow – a common occurrence? Has the disease’s advanced stage led to frequent tiredness and shortness of breath? These are both strong indicators that the condition may be approaching terminal status, especially if there has already been significant treatment and the doctor has determined that no further treatment would be advised or helpful. Some people also have additional treatment options, such as major heart surgery, but choose not to pursue them. If you are deliberately turning down potentially life-extending treatment, it is probably time to talk about hospice.
Patients’ Use of Hospice
According to recent statistics, the average stay in a hospice situation is about 72 days. This is enough time to make a big difference, but most patients and their families report wishing that they had started receiving hospice care sooner. Broader education about the services that hospice can provide is important in making people aware of its benefits so that they are more willing to consider it for their families.
Asking for a Hospice Evaluation
If you are starting to think that hospice is a good idea in the near future, talk to the doctor. The physician can request a hospice evaluation, and this will determine whether you or your family member is eligible for these services at this time.
How Hospice Can help patients and their families
There are many ways that a hospice program can help patients and their families. The compassionate professionals who work with hospice are dedicated to providing the best care, and they constantly evaluate to determine what that might be. The primary goal is relieving physical pain and emotional distress.
For heart patient’s, chief concerns include dealing with chest pains, shortness of breath, weakness and excessive tiredness, hypertension and a general decline in being able to perform normal, everyday functions. In addition to caring directly for these symptoms and managing them, the hospice team will communicate regularly with the cardiologist and bring in any necessary medical equipment, as well as administering prescriptions and oxygen as needed. The team will stay on top of symptoms in order to dramatically lessen the possibility of your needing to go to the hospital.
Benefits of the Hospice Model
One of the nicest things about the hospice model is that it allows patients to remain in the comfort and familiarity of their own homes. Patients who live in long-term facilities such as nursing homes are also able to receive hospice care. The highly trained individuals who work in hospice have a deep sense of empathy and concern for the patients, as well as the medical knowledge required to administer care in a professional and efficient manner. Hospice workers coordinate with all of the patient’s doctors, pharmacists and other medical professionals in order to ensure that everyone is on the same page when it comes to care.
At the patient’s request, a member of the clergy can be in the loop as well. Spiritual and emotional wellness is a very important component of hospice care, and in addition to the caring health professionals, there are counselors and chaplains who are specially equipped to handle a patient’s inner distress. These individuals can provide comfort and help them to face their impending death with a sense of peace.
How Hospice Benefits Families and Loved Ones
While hospice is meant to provide care and comfort to a dying patient, the care and comfort of the family is also an important consideration. The people who work for hospice are equipped to serve the family in a variety of ways, easing their burden and giving them information on how to face the challenges that lie ahead. These challenges often include becoming primary caregivers, taking over responsibility of finances and becoming emotionally distressed at the prospect of losing a person so dear to them.
Hospice can help in all these respects and more. The hospice team will provide ample education to family members about how to undertake caregiving duties for their loved ones. For those with no training in the field of medicine or service-related professions, the prospect of spending many hours a day taking care of a sick loved one can be very intimidating, especially since patients are often unable to communicate clearly in the last days and weeks of life. However, the more family participation there is, the greater the overall care and comfort is likely to be. Hospice is committed to providing all the education that is needed to empower caregivers.
Facing Difficult Times
As the patient’s condition worsens, family members will increasingly face challenging choices. For instance, there may be medication that a patient is permitted but not obligated to take. If the patient is unable to speak for himself, the hospice professionals can help family members decide on the best course of action. If a hospice nurse is not at home at the moment, family members can call and talk to a nurse at any time of the day with questions and concerns.
In addition to bolstering the spirits and emotional health of the patient, hospice professionals can do the same for family members. It can be very valuable for people watching their loved ones die to speak candidly with a hospice chaplain, who can address questions, alleviate concerns and simply be a shoulder to cry on. If the people serving as primary caregivers need a break, hospice will provide up to five days of care so that the family members can get away from the stress and responsibility of caring for a terminal patient for a little while.
Understanding Financial Burdens
The financial burden of end-of-life care can be extensive for families, even if the patient has excellent insurance. There are many costs involved, and hospice offers financial counseling to help families deal with them all. From setting up payment plans for medical treatment to paying for funerals, hospice’s social workers can help family members get financial assistance and create solid financial plans. Meanwhile, the bereavement team is there to help loved ones during the year following the patient’s death as they navigate their own personal grieving process.
Additional Benefits to Consider
The word “hospice” conjures up images of a dying patient being cared for in their own home, but many people have very limited knowledge of what actually goes into hospice care. There are many benefits that go beyond just the basics of getting professional medical help in the home during the final weeks of life.
Hospice aims to provide comfort not only in physical terms, but also when it comes to emotional and spiritual health. The latter applies to the families of patients as well as the patients themselves. The longer a patient is in hospice, the greater the level of comfort and familiarity and the more good the team can do. These hospice professionals become extremely involved in the patient’s life, getting to know each family intimately. Hospice workers help family members to stay involved, providing personalized training and advocating on behalf of the patient with doctors and other professionals.
Reducing In-patient Hospitalizations
Those who receive hospice care generally want to avoid returning to the hospital, and the hospice team will do everything possible to keep the patient’s symptoms at a level that can be managed from home. Rates for hospitalization in the last month of life are far lower for those who receive hospice treatment. Additionally, hospice provides both patients and family members with a strong sense of security in knowing that someone is always available to help if needed. Hospice workers are frequently at the house during the day, especially toward the end of the dying process, and they are only a phone call away any time that additional help is needed. The hospice workers often come to feel like family during this very challenging but meaningful time.
Talking to Potential Caregivers About Hospice
If you are in a terminal condition, it can be difficult to broach the subject of hospice with those you love. However, this is an important conversation to have. Being willing to take the initiative to bring it up can save you and your family a lot of anguish in the last weeks and months of life.
It’s important to learn as much as you can about hospice before you discuss it with your family. Educate yourself so that you can clear away any of your own misconceptions and be better equipped to answer any questions that might come up. These are the people who will be assuming the roles of caregivers along with the hospice workers, so it is natural that they will have questions and concerns. Understand the responsibility that you are asking them to accept, but also be ready to alleviate their worries.
Evaluating Different Perspectives
Before you speak to them, you should also evaluate their perception of your condition. Do they realize how serious it is, and are they willing to accept it? If they are not at the point of understanding that you have only a short time left to live, you may want to enlist the aid of a professional for this discussion. A doctor or member of the clergy can assist you in breaking the news gently and broaching the topic of hospice so that family members understand its benefits.
Discuss your plans for the remainder of your life. What are you hoping to gain from hospice first and foremost? Whether your primary goal is to stay home without returning to the hospital or to have as little pain as possible, it is important to let your family know about your thoughts for the immediate future. Your loved ones can then share their own concerns and hopes with you.
Starting Tough Conversations
Starting this conversation is a challenge, but it’s just as tricky for your loved ones. You can build a bridge to clear communication by bringing the topic up yourself. Asking them for permission to proceed before simply launching into this difficult conversation can make the process easier; if they can’t handle this discussion right at the moment, you can postpone it until another day. Scheduling a time for this conversation might be a good way to handle it if your family members need time to prepare themselves to talk about this topic.
If you are not the patient but the family member, this conversation can be just as difficult. Many of the suggestions above apply. It is important to consider the feelings of the patient. He may not be ready to accept that he is dying, and if that is the case, you should not push the issue. Make it clear that hospice is something that you would like to consider and say that anytime he wants to talk about it, you are open to the discussion.
Communicating Your Wishes
Be sure that you can articulate your reasons for wanting to use hospice care. If you can make a strong case for its being helpful to the patient as well as to you, your chances of success will be greater. Remind the patient that hospice is not about relinquishing control. Indeed, it allows patients to have much more say over their care decisions. As long as they are able to articulate their desires, they will be able to direct their own care, and advanced directives can allow them some degree of control even when they are unable to speak for themselves.
Make the patient aware of all the spiritual and emotional resources that will be available through hospice. Informing a patient about the benefits to you and other family members may alleviate any concerns that the patient might have about being a drain on the family. Reassure the patient that you want to act as a caregiver because of the depth of your love.
Listening To Others
Finally, be a good listener. When you bring up the idea of hospice, you’ll have a lot of information to share, but pace yourself as you do and pause frequently to see if the patient has any comments. Listening carefully without interruption is a compassionate response, and it can help your loved one feel much more valued and in control during this difficult but empowering conversation.
Contact Harbor Light Hospice for Support
Harbor Light Hospice can significantly improve the overall quality of life for heart disease/failure patients and their families. To learn more about our supportive hospice care services, call one of our locations or send us a message online.