For those struggling with lung disease, the decision to continue medical treatment after it ceases to appear effective is one of the hardest choices imaginable. Whether you’re the suffering patient or the hurting loved one, it’s hard to even bring up the subject of end-of-life care, much less plan a course of action. Diseases like cystic fibrosis, COPD, bronchiectasis, pulmonary fibrosis, chronic asthma, or even tuberculosis can take their toll on a family, and it’s vital to understand that there is a solution. Hospice care can provide the support and guidance needed in the tender period after the doctor has announced he’s done all he can. Hospice provides an alternative to despair for many thankful families, and it’s important for you to know whether it might be right for you and your loved one.
At what point should hospice be considered?
In many cases, hospice care is sought once a patient has been told he has less than six months to live. Whether a doctor has made this prognosis or a patient has become convinced that his condition has deteriorated to a point of no return, it’s probably time to consider hospice care. Here are some ways to determine whether it’s time to consider hospice:
- Does the patient wish to remove all breathing apparati?
- Has the patient undergone respiratory distress occasionally resulting in trips to the ER several times in the past year?
- Is the patient weary of hospitalization?
If you answered “yes” to these questions, it may be time to ask a physician or pulmonologist whether hospice is indeed the next step you need to take. It’s a good idea to be proactive in bringing up the subject since no doctor knows how a patient is feeling like that patient and his or her loved ones. Even if your doctor hasn’t yet brought up hospice, it’s completely acceptable for you to broach the issue. If you are contemplating this course of action, feel free to contact us to request an evaluation.
How does hospice benefit those suffering with lung disease?
Understand, with hospice care, ongoing evaluations allow for day-by-day adjustments to whatever plan is developed, allowing patients to live out their final days in the most pain-free environment possible. Rather than being a choice to give up, hospice is a unique, tailor-made strategy to ensure comfort and dignity after all other medical resources have been exhausted. Here are some comforts that lung disease patients should expect to receive from hospice:
Safe, familiar surroundings with medical assistance at the ready
One of the greatest things about hospice is that it eliminates those disorienting hospital stays that can wreak havoc on a patient’s emotions and nerves. Hospice care is available for those still living at home as well as those who have moved to a care facility or assisted living center. Of course, if the need arises to transfer the patient to a medical center, that’s still an option if the patient and/or his family so desires. Once there, hospice care continues to be provided.
A coordinated game plan that leaves no one out of the loop
Hospice can take a load off of loved ones by providing dedicated personnel who work carefully with each participant in the patient’s case and keep each one informed of the progression and status of the patient. This includes passing along updates among doctors, hospital staff, social workers, and even the patient’s pastor or rabbi. This removes the burden of carefully documenting each detail from the caregiving loved ones. The hospice team also provides all the medical supplies necessary, releasing loved ones from the pressure of keeping up with prescriptions and complicated medical equipment.
Worst-case scenario preparation.
In the event the patient becomes unable to breathe, the hospice team has a standing game plan detailing exactly what measures should be taken. Not only does this provide reassurance to the patient and family, it also allows the patient to remain at home to receive the care they’ve previously been required to visit the emergency room to acquire.
Fewer terrifying instances of breathing inability.
A well-designed plan makes it much less likely patients will experience respiratory distress, and when those episodes do occur, round-the-clock medical personnel are available to provide relief
Access to spiritual guidance and emotional support
For those facing the end of their time here on earth, the availability to receive answers from knowledgeable ministers can make all the difference in the world. Hospice care doesn’t deny or prevent this from taking place; instead, caring chaplains are ready to coordinate meetings between local pastors and church leaders and their patients.
How does hospice affect the patient’s family?
Usually, by the time hospice care is sought, loved ones are exhausted from the ordeal of recurring hospital stays, emergency room visits, difficult decisions that may not be reversed, and draining emotional support. Even though the decision to bring in hospice isn’t an easy one, it can be just the answer to the heavy load they’ve been carrying.
Here’s how hospice directly affects the loved ones of lung disease patients
- Hospice provides assistance and trained advice for the loved ones responsible for making difficult choices for a patient who can no longer make those decisions. Choices like whether to continue antibiotics, whether to return to the hospital, and whether to perform artificial resuscitation for a loved one who hasn’t made their wishes known are devastating, and the knowledgeable support of a medical professional who knows the family can be invaluable.
- Hospice trains loved ones to communicate with unresponsive patients, and it teaches them how to properly care for those who require complete assistance around the clock.
- Hospice provides spiritual support for the loved ones as well as the patient; after all, many times the loved one is the only one cognizant of the situation.
- Hospice offers around-the-clock medical support by phone for any emergency that may arise.
- Hospice offers relief for exhausted caregivers who need a break. A pre-selected allotment of respite care gives family members the chance to take some time off when it’s needed most.
- Hospice offers financial counseling and assistance for families overwhelmed with the burdens of long-endured disease. Hospice also can provide financial relief through human services in the event of death.
- Hospice helps grieving family members cope with the death of a loved one.
What can I hope to gain from hospice care?
For many people already overwhelmed with the effects of an extended illness, the mention of hospice can trigger a host of emotions. Feelings of failure, guilt, fear, and loss are common, but many times these negative reactions are unfounded since hospice can sometimes bring the very ray of hope that a family has needed.
A Sense of Normalcy
Once families have decided to call in hospice, the suffering patient is finally allowed to stay in comfortable surroundings with caring medical personnel ready to provide assistance. Many times this is exactly what a patient desires for his last days but doesn’t know how to express.
Dignity and Respect
Many times, after being bounced around from nursing home to hospital to home to emergency room, patients and their families can feel powerless, as though their feelings have no value. When hospice enters the situation, the process becomes intensely personal as great care is taken to determine the exact wishes of the patient and the loved ones for the tender last days. Hospice gives a voice to ensure that the end of life is as comfortable and as quality as possible.
Expert Care Outside the Hospital
Hospice reduces the likelihood that patients will need to be hospitalized. Because care is ongoing and the patient is monitored frequently, the likelihood of the need for emergency care is much less than for patients who are without hospice care. For the terminally ill, this can mean the difference between terrifying ambulance rides and calm intervention in their own beds at home.
Knowledgeable Support Eager to Help
For families who want their loved one’s last days to be as comfortable as possible, the peace of mind knowing that a team of medical support is ready and waiting to provide training and valuable assistance can make all the difference in the world.
When and how should the conversation begin for the family of a lung disease patient considering hospice care?
Whether you’re the patient or the caregiver, when you’ve been through the emotional turmoil of a terminal illness, it can be overwhelming to even think of bringing up the subject of calling hospice. If you’re thinking it may be time, the following ideas may make it easier to bring up this difficult subject with your loved ones.
Information for Patients
The first thing you must do is be completely certain that you are making the right decision. If you feel certain that recovery is still a possibility, you probably aren’t ready for hospice. Take the time to thoroughly explore all that hospice means; try to find a way to speak with other families who have chosen this path already with their loved ones. Be ready to explain to your loved ones what you learn so you can quell any fears and faulty assumptions they may have about hospice.
Speaking to Family Members
Before you bring up the issue of hospice with your family members, try and get a feel for how they’ll respond. Many family members are in denial that the end may be truly near, and it may be better if you ask a minister, friend, or your doctor to bring up the subject instead if you feel they’d accept the news better from them.
Having Tough Conversations
When speaking to your family, it’s important to discuss your desires. Although most people believe it’s very important for the sick to make their wishes for their last days known, very few people actually do so. It’s a good idea to write down your desires and discuss them, as well as discuss the desires of your family members. Make sure you explain that by choosing hospice, you are attempting to make things easier on yourself and your family; you aren’t simply giving up the fight.
Understanding Your Reservations
If you feel hesitant to bring up the issue of hospice out of fear your family won’t understand, take heart: many times family members are ready to transition to the next stage, but they are also reluctant to bring it up for fear of upsetting the sick loved one.
Don’t be afraid to have the initiative and relieve your family of bringing up the matter if you feel this is the right course of action.
Information for Family Members
It’s vital that you know exactly what hospice means so that you can bring up the subject in a comforting, non-threatening manner. Just the term “hospice” can trigger a range of painful emotions in your loved one, so it’s important that you know how to dispel the common misconceptions surrounding hospice.
Before you attempt to prove any point, give your loved one the benefit of asking for permission to bring up a tough subject. Perhaps you could ask, “Do you feel comfortable discussing the plan of action we should take now that your condition has advanced beyond typical hospitalization?”
Let Your Loved One Express Themselves
Give your loved one the opportunity to express what are the most concerning aspects about the days ahead. Perhaps she fears the intensifying pain of her illness, or maybe he’s worrying that he’ll become a burden or have to leave his home.
Explain to your loved one that hospice can be the answer to each of these fears. Make sure to be clear that hospice is not a decision to give up, but is rather a choice to make sure a person’s wishes are carried out and that quality of life is a priority for the remaining time on earth.
Explaining Hospice Care
It’s important that your loved one understands that hospice care is all about providing personalized care that puts him or her in charge of those final days. Make it abundantly clear that they will not be neglected or pressured to take any steps that aren’t in their best interest or respectful to them.
If your loved one responds with anxiety or reluctance, avoid arguing. Try to see things from their perspective so you can answer in the wisest manner possible. If you feel it’s pointless to continue trying to convince them, back off and approach the subject later when they’ve had more time to consider it. After all, it’s all about them: Make sure to treat them as you’d like to be treated under the same circumstances.
Contact Harbor Light Hospice for Support
Harbor Light Hospice can significantly improve the overall quality of life for lung disease patients and their families. To learn more about compassionate hospice care, call us or send us a message online today.
