Do you have questions about palliative care, hospice, and/or end-of-life planning? It can be very difficult for patients, relatives, and caregivers to find information about these topics. Recently, a pulmonologist with expertise in palliative care of patients with end stage lung disease joined our support group to hear the community’s questions. He also wrote down responses to the most frequently asked questions. Learn more about his expertise and read his perspective below.
About Dr. Sidhom:
Dr. Ramy Sidhom is a member of the PF NOW! Advisory Committee. He is a physician trained in Pulmonary, Critical Care, Hospice & Palliative, and Internal Medicine. He has a passion for helping patients with chronic disease understand and navigate their healthcare. His goal is always to empower patients to take charge of their care and make decisions that are best for them. Ramy is looking forward to finding more ways to assist the PF NOW! team in providing such a great support to those affected by pulmonary fibrosis.
Dr. Neha Shah (Director of PF NOW!) interviewing Dr. Ramy Sidhom (member of PF NOW!’s Advisory Committee)
FREQUENTLY ASKED QUESTIONS PART I: Understanding The Basics of Hospice and Palliative Care
PF NOW!: What is hospice, and how do I know if hospice is right for me? (or how do I know when it’s right for me?)
Dr. Sidhom: “Hospice is a service provided to patients who we estimate have about 6 months or less left to live. It is care that is provided with the goal of improving quality of life and improving symptoms, not prolonging life. It does not shorten life, and can sometimes actually lengthen it. Hospice can be provided at home, at a nursing facility, or in the hospital. It can be right for patients who feel like the burdens of medical care are no longer providing them with meaningful benefit.”
PF NOW!: How do I talk to my family about hospice?
Dr. Sidhom: This can be difficult to do, but something that your medical team (or Palliative care providers) can help you think through. Each family and patient situation is different. It can be helpful to have an understanding of how a disease usually progresses, so that your family knows what to expect. It always helps to keep in mind what is important to you and your family and share with them how Hospice might help you prioritize those things.
PF NOW!: How do I actually go about starting hospice? (how do I talk to my doctor about it, how do I find hospice resources near me, how do I pick a provider, how much does it cost, etc.)
Dr. Sidhom: Many different agencies provide hospice, which is a service that is usually paid for through Medicare. It does not cost patients money to enroll in hospice. Different agencies have different services (for example, different Home 0xygen devices), and this can be important in choosing an agency. Your providers can help you get in touch with the Hospice agencies in your area. Let your doctors know that you heard about Hospice, and are wondering if it is right for you. They will be able to provide you with more information that is right for your specific situation.
PF NOW!: What if my doctor’s asking me to consider hospice, but I’m not ready? (what other options do I have?)
Dr. Sidhom: Many people (and doctors) may feel like it’s not the right time for Hospice. This is normal. Even if you don’t feel like you are ready for it, it is helpful to get information so that you, and your doctors, can help figure out when is a right time (even if it is not right now). You always have the option of continuing the care the way you are doing, without making any changes. Some patients also benefit from seeing Palliative Care providers, which can help you with symptoms, planning for the future, and overall support even if you are not yet signing up for Hospice.
PF NOW!: For relatives/caregivers: how do I talk to my loved one with PF about considering hospice?
Dr. Sidhom: This can be hard to do, and is very different for each patient. Often times, the best way to start talking about these issues is to talk about how your loved one’s experience with their Fibrosis is changing. It is helpful to ask about what is most important to them as these changes progress, and what things they are worried about. These conversations are usually a good starting point to introducing Hospice and how it might help them to prioritize the things they find important, and help with the things they are worried about.
PF NOW!: Once starting hospice, what’s it like?
Dr. Sidhom: Hospice can take many different forms, and can happen in different places. It usually consists of a team of doctors, nurses, nurse practitioners, social workers, chaplains, and other professionals who work together to care for you. Usually it looks like weekly nurse visits who come to you to see how you are doing. The hospice agency is available 24/7 for any concerns or issues that come up. Depending on what your needs are, they can come more or less often, or provide care in different places. The hospice agency would take the place of your other doctors and providers.
PF NOW!: How does it differ from palliative care?
Dr. Sidhom: Palliative care is for any patients with serious illness, at any point of their illness. Patients can be expected to live for a long time, or even to be cured. It provides an extra layer of support for patients and does NOT take the place of any of their other providers. Hospice care is for patients in their last phase of life and takes the place of their usual providers.
PF NOW!: Can hospice happen from home?
Dr. Sidhom: Yes, hospice can happen from home. It can be provided to you almost anywhere that you are residing (nursing home, assisted living, or even in the hospital)
PF NOW!: How long does hospice last?
Dr. Sidhom: Hospice lasts up through the death of the patient, and for some time afterwards to provide support to family and loved ones during the bereavement period. People have remained on Hospice for several years if they have not passed away, but continue to show signs that they are getting worse.
PF NOW!: How might my symptoms or quality of life change?
Dr. Sidhom: People’s symptoms and quality of life usually improve. Burdensome treatments are stopped (unnecessary medications, trips to the hospital, blood draws, frequent clinic visits), and we can be more aggressive with medications and treatments to help with symptoms. Because there are professionals available to help with any spiritual, financial, social, or psychologic concerns as well, people find that their overall suffering is improved. Your disease will continue to progress, and with it any of your symptoms, but the Hospice agency will be dedicated to help you minimize the suffering as much as possible.
FREQUENTLY ASKED QUESTIONS PART II: Discussing End-of-Life
PF NOW!: What is dying like?
Dr. Sidhom: The dying process can be different for everyone. Depending on what you envision for your final moments, Hospice and Palliative care can help try to make that happen. People with pulmonary fibrosis usually pass away after their breathing gets worse. Many will end up on breathing machines in their final hours. Those receiving Hospice care are usually receiving medications to help them not feel short of breath in the end.
PF NOW!: How do I know when end-of-life is near?
Dr. Sidhom: The best way to tell that the end-of-life is approaching is by monitoring your respiratory strength. As patients with pulmonary fibrosis reach the final phase of life, they often notice that they are getting weaker, need more oxygen, and need more time to recover from activities. They may find that they aren’t even able to get up and walk around the house anymore.
PF NOW!: What will happen to my body as the end nears?
Dr. Sidhom: Usually, patients become very sleepy in the last few moments of life, which is an effect from having low oxygen levels. Some patients remain awake and feel more and more short of breath, which causes stress to the body until you pass away. Your providers can give you medications to help with these symptoms at that time.
PF NOW!: Will I suffer?
Dr. Sidhom: It is possible that you will suffer at the end of life from your breathing problems. We hope to be able to prepare you enough so that we can minimize that suffering as much as possible. If you are able to receive hospice care at the end of your life, then there is a much higher chance of you NOT suffering significantly. Many patients with pulmonary fibrosis pass away peacefully while they are receiving Hospice care.
PF NOW!: What will it be like for my family? Is there support available for them?
Dr. Sidhom: Each family reacts differently to the death of a loved one. This can be heavily influenced by how prepared a patient and their family are for the final stages of pulmonary fibrosis. It can be very peaceful and calm, or it can be quite devastating and sudden. Palliative care aims to provide support to loved ones as well as the patient during this time. If Hospice care is involved at the end, then there are often services available to the family after a loved one has passed away for some time (sometimes up to 1 year after the death).
Do you have more questions about hospice, palliative care, or other matters pertaining to end-of-life? Comment below with your questions. For reminders about future events with guest speakers, sign up here. Be sure to also join our online community forum for 24/7 support.
Stay In Touch
PF NOW! hosts virtual support groups on Teams multiple times each month. Not only will you strengthen your network of connections but you’ll learn firsthand how those with PF best look after themselves. PF NOW! also has a Facebook group whose active community shares their PF journey and their tips with others. New to online support groups? Download our free step-by-step guide for online advocacy here.
Never disregard professional medical advice or delay in seeking it because of any information received from us.
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